Thanksgiving - So much to be thankful for

Tomorrow is Thanksgiving and we have so much to be thankful for. Korbin is doing absolutely wonderful. He is 7 months old now and weighs 14 lbs 14ozs. He is thriving and developing right on track for his adjusted age which is nearing 5 months old. He is getting up on all fours and rocking and is able to get just about anywhere he needs to go although it does take a little time. He always has a smile for us and thinks just about everything is funny. He is such a joy.

We are still watching his progress with his fisted hands and his foot that has excess tone. His legs also have a bit more tone than normal which may prevent him from chewing on and playing with his feet but that is pretty small in the grand scheme of things. The OT and I discussed again the likelyhood of him being diagnosed with CP since he is a bit older now. What she told me wasn't really surprising. She believes that he will be diagnosed with at least a mild CP since he just hasn't let go of the excess tone. We have noticed him compensating for his fisted hands by grabbing things like his bottle with his fists. So far though, it seems like the worst case scenario is him needing AFO's or braces on his foot and possibly splints on his hands at night. If that is all we will need then I wm okay with that.

I realized tonight how raw I still am about the trauma of his birth. A song on the radio touched a nerve tonight and made me see that I am still not "over" his almost tragic birth. I still think about it regularly and thank God daily for giving him to me and allowing him to stay with me but I guess I didn't realize that there was a part of me that was still very emotional about it. After my mini breakdown I found myself wondering when if ever that part of me will begin to heal and be less painful. That also got me thinking. Do I really want it to go away? It is part of who I am now and it is part of Korbin although he will never remember it. I think that maybe that "raw" part of me is what reminds me how blessed we are and how good, powerful and almighty God is. No, I don't like crying when a song comes on the radio or when I see a baby born too early on television or even when someone I know has a baby too early but I think that this may be my testament. Although I don't know what God's plan was or is for that matter but I wonder if that is why he gave me Korbin and chose to let my little angel stay with us: so that Korbin and I could be a testament and show the world his power.

I guess with the holidays quickly approaching and this year quickly passing us by I have been doing some soul searching. Again, I feel that I can't thank everyone enough but thank you all for your continuing prayers for my family and my little warrior, God's warrior.

Sabrina

Take that Dr. Gloom!!!

Well, just a quick update. There has been a good deal of progress since we came home from New Orleans. Korbin is now 6.5 months old, 4.5 months adjusted and weighs 13 lbs 11 ozs and is 24 1/4 inches long. He has started rolling over and is all over the place. He also decided today that he was tired of just sitting there and decided to start trying to crawl. He has been doing wonderfully on his milestones and is just growing more and more everyday.

The roller coaster that is my life!

Whew a lot has happened over the past couple of days! As you all may know that we went to New Orleans this week for a multitude of appointments and tests. We started the busy week with another EEG. I haven't received the official results but I am sure that it turned out okay. We saw an eye Dr. since we noticed Korbin's eyes sticking a bit. She found nothing major and wants to follow up in 2 months for the issues that she did see.

Well, the MRI was scheduled for Wednesday morning. Well, as we all know that nothing can go completely smoothly for us. We get checked in for him to be put to sleep and after a lot of discussions and many opinions, it was decided that there was no sense in putting him to sleep 2 days in a row and would just put him to sleep, do the MRI and then do the surgery while he was already out (which I had originally suggested but that is a whole other story in itself). Well, because of all of the commotion, we ended up with an unscheduled appointment with the Neurosurgeon. After looking at his latest stats, he informed me that he was no longer 100% positive that there was a need for the shunt. We decided that since the MRI was necessary regardless, that we would go forth with that and then make a decision immediately following the MRI.

That brings me to today, the MRI and surgery date. Well, the surgeon accompanied Korbin to his MRI so that he could see the images as they were coming. Well, he decided that the MRI showed that things were NOT as bad as expected and that he did NOT see a need for surgery!!!! I was floored. I just knew that there was no way to have a whole slew of appointments with no terrible news! On top of that, it appears that the calcium deposits are gone and the Dandy-Walker Cyst is not as prominant as once expected! We will still follow up with the NS every 3 months but if there has been no major changes by the time he is 18 months old, we will part and go our separate ways!

There is no question that God has laid his healing hands on Korbin. I am honestly in awe of the power of the good Lord above. I have never doubted his power but to see the power of prayer and to see yet another miracle first hand is nothing short of amazing. Korbin has been meeting all of his milestones on time which is also very exciting. We do still have some tone issues but ya know, if that is all we have to deal with then so be it. God has blessed us thus far and I am greatful for it all.

Thank you all so much for your prayers! God bless you all!

Sabrina

Almost 5 months, Surgery planned for next month

5 months ago next week Mr. Korbin came into our lives as a gift from God. All children are a gift but God showed me that day to not take advantage of these precious gifts as they could easily be taken away.

A lot has come to pass since my last post. First, in case I didn't mention, Korbin passed his EEG. We finally got his genetics screening back and it was great as well. He had his 4 month check up and was 10 lbs 14 0zs. We also had our first neurological diagnosis of Ankle Clonus. Ankle Clonus makes his leg and foot "beat" like Thumper (for lack of a better description).

His occupational therapy is going well. We haven't started physical therapy yet. We have noticed that he struggle with his right arm and that his right foot is very tight. The neurologist and the neurosurgeon (who we saw today) both agree with me that his legs are tight as well but the OT and the pediatrician disagree.

Originally, we were planning to do the MRI in December but as of today that has changed. Our visit with the neurosurgeon confirmed my suspicions that there has been increased pressure in Korbin's head. We have scheduled surgery for next month to put a shunt in his head. Because it is not seriously urgent, we are able to wait until next month and give him time to grow.

We will be going back to New Orleans in approximately 2 weeks for an MRI (he will be sedated for this) and to see their Neurologist since ours here is out for awhile. We are seeing the neurologist because of a suspected seizure that happened earlier this week. The MRI will be used to get a better look and will be used to possibly confirm the pending diagnosis of Dandy-Walker. We will also return to New Orleans the week before the surgery for the pre-op.

I go back and forth from being terrified and and being okay with it all. We fully anticipated this result today. I had already packed a bag in case I needed to stay. Even though I had prepared myself for this, a little part of me had hoped that I was overreacting. Unfortunately that was not the case.

So, I may post again after the MRI but I will likely wait until after the surgery. Please keep my baby and my family in your prayers.

Sabrina

Almost 4 months....unbelievable!

Again I have slacked a little on updates but in a way that is really a good thing. That means that things are relatively uneventful.
First off, as of last week, Korbin weighed 9lbs 6ozs!!!!!!!!!!
Going back to the last post, we have not had too much happen. We saw the neurologist at the end of last month and that went okay. She was a bit concerned about some jerking activity that his leg was doing so she sent us for an EEG, which came back.......get this......NORMAL!!!!!!!!! I can't help but think that maybe we are starting to take a turn down a road that is just a little less eventful!
She was evaluating Korbin and mentioned that his little toe is bent a little funny. I never thought much of this since many of the folks in my family wouldn't even be runner ups for an ugly foot commercial (they are far too ugly)! During the evaluation I mentioned the hypospadia that was recently discovered. She seemed a little surprised and asked me if there had ever been any genetics testing done. There hasn't been. I asked her what would be causing her to even ask that. She told me that there were some physical anomolies that alone would mean nothing but together could mean a possible genetic issue. The anomolies that she was referring to was the toe, the hypospadia, the brain malformation, and low set ears. We had that test done also that day and are still awaiting the results. The results will do nothing more than be informative. If there does end up being something, Robbie and I will have to be tested to see if we are carriers of something or if it was a fluke.
We did have a little scare that resulted in an immediate CT scan but that all came back okay. We did discover that Korbin has been suffering from reflux and began treating that. We have completed speech therapy and are just doing occupational therapy once every other week. Over the last two weeks, Korbin has changed so much. He is smiling, cooing a little, sucking on his hands and really, just being a baby. I have really been able to relax over the last couple weeks. I am not so nervous about every little twitch. I have really been able to enjoy him rather than fear the things I couldn't control. His OT this week went wonderfully. The therapist was very impressed at the improvement that the two weeks brought. I don't know if the therapy will continue if he continues to improve. They may continue in order to just monitor him at least until he reaches the 6 month (corrected, not actual) mark. 6 months is the magic number for major motor and to know if we are possibly looking at cerebral palsy. We will go back to N.O. in a couple of weeks for another CT and another visit with the neurosurgeon. The visit following this will be the one that we are all waiting for. It will be the MRI, plus he will also be at the 6 month mark so we should know a lot at that time.
As always, I appreciate all of the prayers and thoughts. I will probably update again after our next N.O. visit. By then we will have another OT appt. and his 4 month check up and hoping to have the results of the genetic test.
Thanks again!
Sabrina

3 months old

It has been awhile since I have updated but all in all, things are going well. I am still on high alert for seizures but I don't think we are seeing any thus far. Speech therapy is going well. Well enough in fact that we will likely be done after next week. Our last Dr. visit was a little over a week ago and Korbin's weight was terrific. He weighed 7 lbs 7.5 ozs. That means he gained 19 ozs in 14 days which was 5 ozs over our goal weight! That was exciting. Of course, everyone should know by now that we can't have good news without something happening. The last visit was intended for a circumcision. Well, after the great weight gain, they began the circ but found that they could not complete it. He has what they call hypospadia which is appearantly very common. We will have to see a urologist when he is closer to a year old. Go figure huh? I couldn't help but laugh when they told me this. It only figures.

After our speech appointment on this past Friday the speech and occupational therapist did their post NICU evaluation. They said that for the most part he is doing very well. They are concerned however about the way he lifts himself. They said that it looks like he is over extending himself. Frankly, I am not quite sure what that means but they said it could be nothing but it could be from the hydrocephalus or it could be the early signs of Cerebral Palsy. We will go 1 day a week, every other week for occupational therapy (not sure what they do) and once a month for physiacal therapy.

We go back to the Neurologist on Thursday and shouldn't have to see her again for 3 months or so. We also go back to the pediatrician on Thursday. I am hoping that everything will be good enough now with his weight and everything else that we won't have to be seen again until his 4 month check up which will give me almost a month of not having to see him again.

Maybe we have encountered everything that we will encounter and can continue with our lives and start moving on and living our lives with what we have been dealt. I have found a couple excerpts that perfectly describe having a preemie that I would like to share so enjoy.

Sabrina

~*~How Preemie Moms Are Chosen~*~
(Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
profanity.
"Finally, he passes a name to an angel and smiles.
"Give her a preemie." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a premature baby a mother who knows no laughter? That
would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a seaof self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so
rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you.
"God smiles. "No matter, I can fix that. This one is perfect She has
just the right amount of selfishness.
"The angel gasps, "Selfishness?! Is that a virtue?
"God nods. "If she can't separate herself from the child occasionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised inthe air.
God smiles. "A mirror will suffice."


WELCOME TO HOLLAND
by Emily Perl Kingsley.c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills... .and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I wassupposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

11 Weeks

It is hard to believe that Korbin is over 2 months already! He is getting bigger everyday. We are still waiting on that first real smile though. I have found myself just begging him to smile. It is amazing how much more every little thing means with him. Not saying that they weren't great with the older 2 but I guess that smile from him will show me that he is aware of me and that will mean so much. I think that this is so important to me because of all of the "could be's" that we have been given. Maybe if he would just smile and show me that he is aware of me and who I am everything will be alright. I know that in reality that is not necessarily true but every milestone that we hit will be a relief for me.

We saw a speech therapist this week to see if Korbin is swallowing correctly. This was more to rule that out as a potential problem deterring proper weight gain. Fortunately, the therapist didn't feel that the test was needed so she just analyzed how he drank his bottle. She recommends 1-3 days of therapy per week for a short period of time. The amount of days will depend on how much I am able to do here at home. The exercises are fairly simple and are intended to strengthen his muscles in his mouth to help him drink more and tier out less easily.

I know that I was warned ahead of time that Korbin would likely need a lot more attention than some babies and that we could possibly need many services such as speech therapy, occupational therapy and even physical therapy. I knew it would be a lot but I didn't realize how much all of this would consume my life. As of right now, Korbin is being seen by a pediatrician, a neurologist, a neurosurgeon, a speech therapist and the states early intervention program. It seems like I am living in Dr's offices. I know that it is not his fault and that I should be thanking God that he is even here with us (which I do daily) but it is so much to deal with. Hopefully everything will get easier and we won't have anything else added to us anytime soon. I don't know how much more I can deal with. I know I will deal with what I have to. Having a newborn is already exhausting but with all of the appointments and constant worry, I am beyond exhausted. Everytime his leg jerks I wonder if it could be a seizure, everytime he doesn't eat well I wonder about his weight and his hydrocephalus, I find myself multiple times a day checking to make sure his soft spot isn't bulging, and to top it off, he has started this wonderful trick of spitting up large amounts and choking on it which is nerve racking to say the least. With all of my constant worrying and lack of sleep, it is a wonder I am even able to function properly.

Korbin will see his pediatrician again next week so we will see if he is where he should be with his weight. If my math is correct, he should be at least 7lbs 2ozs by his next visit so we are keeping our fingers crossed.

Sabrina

10 weeks

This week has been fairly busy. I had my visit with the local neurologist only to discover that I will still need to go to New Orleans. It turns out that I was seeing the neurosurgeon in New Orleans. Nothing really new was discovered at the neurologist since we are still not able to have an MRI due to Korbin's age and size and developmentally, we are not able to tell much right now either. At the pediatrician today everything looked good except for weight gain. Korbin gained 10 ozs in 14 days but the Dr. really was wanting him to gain 14 ozs. We are changing how I make his formula in order to make it 24 calories. If he doesn't do well with the new mixture then we will have to change his formula all together to a 24 cal formula. The Dr. also wants to check and make sure he is swallowing properly when he is eating. We have an appointment with the speech therapist to do a scan of him swallowing next week to hopefully rule out any problems in that area. Right now, we are giving him the benefit of the doubt and just going to try increasing his calories and logging his exact intake in ounces each day. If he doesn't start packing on the pounds soon, we will have to resort to a "last resort" option which is defintiely not the most appealing of options. If he doesn't start making some progress we will have to begin talking about a feeding tube to get him to gain some weight. I am really hoping it doesn't come to that because that thought is terrible. On a positive note though, his movement and tone looked good today. There was one excersise that the Dr. performed that Korbin did well on but the Dr said he could have done better but we are just going to keep an eye on it. We discussed in detail infromation on seizures since Korbin is at a high risk of having them. We will go back in 2 weeks for yet another weight check and another measure of his head (which is still growing normally). It seems as though the first weeks were just a precursor of things to come. Please continue to keep us in your prayers.
Sabrina

9 Weeks old

Korbin's due date came and went this week. Looking at him and knowing that he was technically just supposed to be born and that he is instead 2 months old puts things in perspective. Korbin had his evaluation with our states early intervention program last week. This program is designed to notice any developmental delays early so we can work on them early before the child is put too far behind. Because of his prematurity, they judge him by his adjusted age which is a newborn right now. As expected, he tested as a newborn in most areas and a 1 month old in others. He is not considered delayed since adjusted he is just now a newborn. He still qualified however due to his condition. We will be having someone come in once a week to work with him and if later on down the line it looks as though he needs physical therapy or even speech therapy, they will bring someone in to help. I believe this program will be very helpful.

Next week, we will be visiting the local neurologist. I will then decide if I would like to continue going to New Orleans to see the Dr. there or just stay here locally. I am also hoping that I will have a better understanding of everything after visiting her. We will also be having another visit to the pediatrician next week. He wants to check Korbin's head size, weight and evaluate his eating before we try and plan a vacation. I had spoken with the Dr. the other day and he asked me about Korbin's intake. When I told him the amount he was taking, he told me that depending on his weight gain when he sees him next, and if he hasn't increased his feeds, he may want to do another scan of his head. He was okay with the weight gain on the last visit but it was on the low end of normal. We also may need to change the mixture of his formula to increase calories. I will find out next week what the Dr. wants to do.

I also asked the Dr. when I spoke with him if there will be a point any time soon where we won't have to worry so much about the pressure increasing in his head and a shunt being required. He told be that things could change next week or in 6 months or never. I guess the waiting game never really ends.

Sabrina

8 weeks old

We had an appointment yesterday for Korbin's 2 month shots and a sit down with the Dr. about our latest developments. I am not sure if I mentioned in my previous post that the neurologist had said that Korbin has Dandy-Walker Syndrome. I have spent a lot of time searching the internet for information on this. The information available is quite confusing especially for someone who came short of excelling in biology and anatomy. Anyway, Korbin's Dr. sat down with me and explained things tothe best of his ability and also showed me Korbin's CT scan (this is the first time I had ever laid eyes on them). He showed me all of the abnormalities and explained them as clearly as he possibly could given the fact that neurology is not his specialty. He explained that the calcium deposits that had been mentioned a while back are indicitive of possible major motor difficulties, especially in the legs. He also showed me the back of his brain. There is a cyst of spinal fluid in the back of his brain in an area that controls major movement and equilibreum. This too can cause difficulties. All in all, Korbin has been dealt with a double whammy in his brain on top of being 9 weeks early which could also work against his development. He also still has the enlarged ventricals in the top of his brain that are filled with fluid. There is still the possibility of surgery but we are in the clear for now. Korbin's Dr. mentioned that the pediatric neurologist in the area is comprable to the Dr. in New Orleans so we are going to get an appointment with her and see how that goes. The neurologist at Ochsners may be good but I was not overly comfortable with him and he did a poor job of explaining things to me. We are hoping to get in with the Dr. here soon so we may be able to get some answers.

All other aside, Korbin is doing great growth wise. As of yesterday he weighs 5 lbs 10 ozs. He gained a little less than an ounce a day which is a little on the low side of normal but okay. His head is growing at a normal rate which is wonderful since that could be our only indicator of a problem in his head. He has gotten the hang of taking his bottles although there are times that I have to "talk him into it" and fight with him to put his tongue down so he can suck properly. I have managed to get into contact with this states early intervention program and they will be evaluating him today. Although he will likely test to be a "normal" newborn, his condition should automatically qualify him. This program will make available to us speech therapists, occupational therapists and physical therapists. This program is intended to try and work on any development problems early so we can try and "fix" them before he gets older and makes it more difficult.

Being home has been in itself interesting. With a 5 year old who wants to help.....a lot, and a 2 year old for whom the world revolves around (in her mind anyway) who thinks Korbin is nothing more than a noisy baby doll. The first few days were nerve racking but thankfully, the "new" is wearing off a bit so they are leaving him alone more. The 2 year old is getting a little braver and trying to "get" Korbin but we are working on that. I do find myself watching the older two running around and playing and praying that Korbin will be able to run around with them before too long. It is hard not to look into his eyes and wonder what life is going to bring for him but all we can do is pray for him and more so pray for us to have the strength and patience to help him be the best he can be. I know that if he does have any issues, they will likely worry me more than they will him so I will need the strength to be strong if for no other reason for him.

Thank you all for your prayers. I know I haven't updated much lately and I will try to get better about that. It will probably not be daily but I will try to update weekly, even if it only about the little things like the real smile he did the other day!!!!! :0) He is precious and I know that all of you who have been praying so hard for our family would love updates on our little miracle and I feel that it is the least I can do. Thank you all again!

Sabrina

2 weeks at home

We are so glad to be home. Korbin is doing great. At his check up (6 weeks old) he weighed 5 lbs. He is finally eating well. We are having a little trouble with reflux but other than that, he is slowly starting to tolerate more food at a time. We had our follow up with the neurologist and things look okay. They diagnosed Korbin wiht Dandy-Walker Malformation. I had never heard of it so of course as soon as I got hom I Googled it. There was a fair amount of information on it but in the end it is still a wait and see issue. We will go back to the neurologist in 3 months for another CT scan and 3 months after that we will go back for an MRI. The Dr wants to wait since he will have to be put to sleep and he is still so little and young that they want to wait. We are still monitoring his head size and just watching him for any other symptoms that trouble may be brewing. So far, aside from him being a little rotton, he is wonderful.
Sabrina

THE END OF THE ROAD!!!! FINALLY!!!

We arrived home yesterday after 38 long days in the hospital. We are all adjusting to our new family member being home but we are so happy to finally have our little warrior home!! I can not thank everyone enough for their prayers and thoughts. Thank you all so much for sharing in our journey to get him well enough to come home. It has been a long road but now we have finally reached the end and are beginning a new chapter in our lives. He is beautiful and we are so happy!

Sabrina

Day 37

YAY!!!!! I was just told that barring any complications, we should go home tomorrow! The Dr. said that his gut told him to watch for 1 more day since Korbin has made so much progress in such a short period of time. The Dr. is very impressed with how well he is doing although he is still a bit of a "wimpy white boy". I figure that one more day is not going to hurt anything since it has been this long already anyway. The Dr. is preparing the discharge papers for in the morning so fingers crossed that nothing more happens and we will be home tomorrow!!!!

Day 36

We are finally entering the home stretch. I honestly thought that we wouldn't get here. We were not able to go home today but could possibly go home on Sunday. I finally spoke with the Dr. today and was given some absolutely wonderful news. There is no longer any blood in Korbin's head, he has been cleared by the eye Dr., he has passed his hearing screening, he has been cleared by the cardiologist (barring a follow up in a year) and all in all he is developing normally for his age (and the fact that he is a white male). The Dr. is not concerned about the things that the other Dr.s had been concerned about.

He is getting better with his bottle feeding everyday. The Dr.s at the other hospital were very cautious when feeding him so now that he has been given the chance to learn, he is playing catch up. He is doing well. He had to be on a monitor last night since he forgot to breathe a couple times during some feedings but that is also improving. He is taking his bottles much quicker now. Everyday has brough significant improvement. The Dr. wanted us to hang out here for a day or two until Korbin and I really got to know each other and were able to work together during his feedings so he doesn't get carried away.

My little man is sleeping peacefully in his crib in the room with me and is free of all wires and monitors. I can now feed him, bathe him and snuggle with him without worrying about tangling monitors. I am thankful that the Dr.s that Korbin started with were cautious enough to admit when they were concerned. This trip was more than worth the time if for nothing more than the reassurance of another Dr. that everything seems fine right now. There is still a bit of uncertainty about development issues but this Dr. and this neurologist don't seem all that concerned. He told me today that yes, there are some enlarged ventricals in his brain but they are not so far from normal that they are concerning. He said they could have been caused by a little bleed or he could just have large ventricals.

I can not thank everyone enough for their thoughts and prayers and I am so happy to have some good news to report. I will be screaming from rooftops when we are finally given the go ahead to go home and reinstate some normalcy back into our lives.

Sabrina

5 Weeks Old

Korbin is 5 weeks old today. We are here at Oschner's and hopefully preparing to come home this weekend. Although there will follow up required, the neurosugeon did not see any reason for intervention at this time. When Korbin boarded that helicopter on Monday, I felt as though a piece of me was going with him and it was very hard. It has been a long week but the outcome has been great. There is a chance that he could be discharged in the morning but it is still a wait and see. He is still having some minor issues such as his heart rate dropping but so far they are just watching it. He is eating well although last night they had to re-insert the feeding tube since he struggled with one of the bottles. This NICU does things a bit different than the other so it is getting used to things all over again. I am so excited that he could be home by this weekend! Thank you all for all of your prayers for I know that if it wasn't for prayers and the good Lord above my little Korbin would not be here today. I know that there are more people praying for this little man than I believe anyone can really fathom. To be so little and touch so many lives is nothing more than a miracle from God himself. Thank you all for your prayers and I will try and update in the morning as soon as I know if we will be going home.

Sabrina

Day 31

Progress has been fairly slow but he has started eating 25 CC's from the feeding tube at a time and taking 2 bottles a day (1 per shift). He looked a little pail yesterday so they tested his blood again and his counts have dropped again. He is also having other symptoms that he hadn't had before. I was not informed of this until this morning when I was told that tomorrow he will be transferred to New Orleans. He did take a bottle really well for me this morning and took almost the full 50 CC's. I am still recovering from the shock the news brought me. He had been doing so well. They have also been throwing the idea of a blood transfusion around a bit and that makes me a bit nervous but I will deal with that when the time comes. I am not sure what my internet access will be for a while so I will update when I can.

Sabrina

Day 30

I knew that a whole week of progress was just too much to hope for. He had 5 CC's of residual last night so they stopped feeding him completely. He has an IV again and is only getting 15 CC's at a time again by feeding tube only. We have gone back to sqaure one.......again. I am unable to describe the frustration that I am feeling right now. He must have sensed my frustration and anxiety because he was unable to get comfortable and was unusually squirmy for me today. Part of the problem, I think, was that he was still hungry even though he had recently been fed. They have decreased his feeds so much that now he didn't seem satisfied. I thought that we were getting close to the finish line but appearantly we just started another lap. It is not his fault but I just wish there was something that I was able to do to help him do what needs to be done so he can come home.

Sabrina

Day 29

I am slowly beginning to see the light at the end of the tunnel. Korbin is now taking the majority of his feeds by bottle and is getting stronger and eating more everyday. He is now 4lbs 3ozs. He is looking so good and seems to be improving daily now. He had another head ultrasound yesterday and there was no change which is much better than the alternative. The Dr. had thought about putting him into an open crib today but decided to let him have a little more time to adjust to bottle feeding. Just knowing that an open crib is in the near future is so exciting. That means he will be that much closer to coming home.

Sabrina

4 Weeks Old

A month ago today Korbin entered our lives. Before he was born, there was no way of knowing how he would touch our lives and the lives of those who know him only by name. He is unaware of the amount of prayers that are spoken for him and honestly, I am not sure that I am aware of how many prayers are being said for him and my family. It was a whirlwind entry that essentially turned our lives upside down. Looking back at that day and the fact that he was not expected to make it through the night makes where we are now seem like a feat of monumental proportions.

As of yesterday, he is no longer on IV fluids and will not have another IV inserted unless for some reason he stops tolerating his feeds or needs extra fluids. He has been tolerating his feeds so well that they have put him on a 24 calorie formula. He was on a 22 calorie formula. I believe that most normal formulas are 20 calories so they are trying to put more weight on him. They think that he should start gaining weight a little quicker now. He was 4lbs 1oz again today but did gain some weight in grams. The speach pathologist began working with him today. They will do some excersises with him to increase his endurance and strengthen his sucking reflex as well as work on his coordination. They will do what is basically weight lifting for his tongue to try and help him feed better from a bottle. He is slowly improving on the amount taken in by bottle. He still seems so little but he is looking bigger everyday. The blood test that was ordered came back negative for the virus that the Dr suspected made him so sick at birth so we are back to not knowing and will likely never know what made my little warrior so sick. Either way, the results would not change what we are already dealing with so it really doesn't do anymore than put us back to not knowing why this happened. Speaking with the Dr., I mentioned how long this month has been. I guess putting it in their perspective, this month, starting where we did, has gone quickly. I was told that as sick. little and early as he was, we have made huge strides.

Sabrina

Day 27

We are still in limbo with the feeding. Since he has been doing so well digesting, they have decided to try every 3 hours again. He now is getting a bottle every other feed with the feeding tube in between. He is starting to quickly pack on the pounds now weighing in at a hefty 4lbs 1oz. We have scheduled a disharge planning meeting for a week from Tuesday to have a time to sit down with the Dr and other specialist in order for me to know what will happen when discharge is a little closer and what to be prepared for when he comes home. As much as I want him home this just seems terrifying now. As of right now, he is not taking much by bottle and I can't seem to get him to eat as well as the nurses can. What if I am not able to do it? Am I going to be able to split my time evenly between the older kids and Korbin? Will I be able to give Korbin the attention that he is most definitely going to need? What if I screw up? These are questions I know that many people have asked themselves before bringing a new baby home whether it be their first or fifth but I am scared that I am not going to be able to do it right. I guess I have no choice but to just try and see. I guess if it comes down to it, Mikey will just have to take me on Montel in 15 years and tell me how bad I messed up then we will all go about our business ;) . I think it is more overwhelming since I am not too sure what to expect yet. Hopefully I will have a better understanding of what lies ahead soon. I have a fear of the unknown and the next year or two could very possibly be uncharted territory for me.

Sabrina

Day 26

Today I was able to schedule my visit so that I was able to attempt to feed Korbin with a bottle. He did okay but really nothing spectacular. I saw the reason that the Dr. is wanting to have a speech pathologist come and work with him. He is very slow to start sucking on the bottle and really needs help getting his momentum. All of that work just wears him out so he is not able to take as much as he should be taking at this point. Hopefully he will just wake up and choose to eat but it looks like it will be work. It is seeming like we are going to have to work twice as hard for every skill that is seemingly taken for granted in a healthy baby. He is finally able to digest well but now we are struggling with intake volume. He is getting 50 CC's by the feeding tube but is still only taking 14-30 by bottle. He did gain a little weight and is up to 3lbs 14.8ozs. I know that I should be happy for the progress made but this is all so much more difficult than I could have ever imagined.

Sabrina

Day 25

Another day has gone by. Not much change has happened over the last few days. No different today. The only change made today was to increase the amount of milk given through the feeding tube. He is now up to 45 CC's in the feeding tube. He is still only able to take between 20 and 30 CC's before he gets too tired and falls asleep. In the end, when he is taking all bottles, I am assuming that they will be judging total intake over the day and not just per feeding. He still has the IV although the fluid is now different and less potent. He has started gaining weight again. They told me wrong yesterday so yesterday he was 3lbs 13.5ozs. He is back up to 3lbs 14ozs. They checked his eyes again today so I will call about that tomorrow. Right now it seems as though we are on cruise control with such little change daily. I am not so patiently waiting for some increase in speed to the process. I am, however, thankful that at least we have stabalized with even the most gradual upswing since last week felt like we were on a fast course to crashing. It is still so frustrating that the process seems to be taking so very long. He is almost az month old and the only thing that I have done for him is change a diaper. I have not been able to feed him or really do anything of any importance for him. I know that soon I will be glad not to have to change diapers but it is just amazing to me the little things that are taken for granted.

Sabrina

Day 24

First, happy mother's day to all you moms. This morning was tough. I wanted nothing more than to spend my mother's day with all of my kids. Unfortunately it didn't work out that way so I spent some time this morning at the hospital with Korbin. Not much change today except minor feeding changes. He has lost a little more weight but is still 3lbs 14ozs. They measure in grams I am assuming so they can track things better. He is starting to stay awake more and was awake the whole time that I was there. The nurses in the NICU made me the sweetest thing that they could have made. It was a little poem with his handprint and footprint on it. I sat there and cried a bit this morning after reading it but I know that he is where he needs to be but it doesn't make me want him home any less.

Sabrina

Day 23

We may be making a step towards finding out what happened and why he was so sick. We don't know for sure yet but the Dr. is sending off blood work today. We should know something in the weeks to come. The results of the CT scan confirmed what we already knew: there is damage to the ventiricals in his head. The CT also showed some calcium deposits in his brain that are not supposed to be there. These calcium deposits are what have given the DR. an idea so to what to test for. Although normally, they would not hope fot the test for this to come back positive, we already have and are aware of many of the possible affects of the illness that he is testing for. The illness would be something that I would have been exposed to late in my pregnancy but was likely silent in my body. It is a virus that is in the same family as the chicken pox and like the chicken pox, most people my age had already been exposed to and once exposed, the body builds immunity. If this test is positive, it would mean that I had never been exposed to this virus until late in my pregnancy. The later in the pregnancy the exposure, the better chance for survival. Assuming this is what he had and still has, there would have been nothing we could have done to change the outcome of things since there really is no cure. If this is what he has, then the only other possible affect that we really will be looking at is the chance of hearing loss. His hearing has yet to be tested so we do not really know anything about that yet. If it turns out that this illness is not what made my little man sick then the Dr. will go back to the drawing board. The reason that he is thinking about this illness is a combination of things. The bleed, calcium deposits, Korbin being very sick and having an extremely low platlet count. One affect of this illness that we know has not affected him is eye problems which were not found.

It is almost relieving knowing that we may have a reason behind all of this and knowing that there was nothing that I could have done about it. It is very hard for me not to feel responsible in some way for this outcome although the logical part of me knows that I did the best that I knew how to do. He is doing well on his feedings today and yesterday. He did lose a bit of weight due to the extra work that is required in taking a bottle but he is still at 3lbs 14ozs. He has surprised everyone including the Dr's with his bottle progress. We still have a long road ahead. The Dr. told me today to prepare myself for at least another 3 weeks. It could be sooner depending on his progress but to just be prepared for another 3 weeks. He is still in the isolette and the Dr. has no intentions of even making an attempt at maintaining temperature yet. I am ready for this chapter of my life to close so I can move on to the next chapter of taking care of all 3 of my babies.

Sabrina

Day 22

There has been a glimmer of hope today. Yesterday's attempt at a bottle feeding was wonderfully successful. He had very little problems and took a whole 20 CC's. Today, they are doing 2 bottle feedings then a tube feeding and if all goes okay, another 2 bottle feedings. So far, he has taken 30 CC's from a bottle then 28 CC's from a bottle. They remove the tube with bottle feed so the next feed will determine how well he is digesting. They will reinsert the tube and see where we stand with residual. They did the CT scan today that was originally going to happen next week. I will know the results tomorrow. Right now, I believe eating and digesting is the only issues keeping him in the NICU. The bleed in his brain and the issues that stem from that will be dealt with when he comes home. He will also have to learn how to hold his temperature but I don't really think that will be a problem since he seems to stay fairly warm up to this point.

I have found myself hopeful today. I am not looking forward to the CT results BUT Dr. Gloom is off right now and the other Dr. has yet to bring me bad news so maybe that can count for something. I know that we are likely going to have some setbacks with the bottles but so far, he has exceeded everyone's expectations. The Dr. did not expect him to be able to drink out of a bottle and he has so far polished off 3. I am being very cautious with getting my hopes too high since I know that the let down will be all but devestating should something go wrong. It did appear this morning as though Korbin was trying to make his get away. The nurse heard his monitor alarming and when she went to check on him, he had scooted to the top of the isolette bed and looked as though he was trying to get out. Maybe this means that he is ready to come home.

Sabrina

3 weeks old

Today my little man is 3 weeks old. We have come a long way from the day he was born but there still does not seem to be much progress. Even the Dr. pointed out that instead of the 2 steps forward 1 step back we have been taking 1 step forward 2 steps back. On a good note, the bleed has stopped but of course with every piece of good news there must be bad. As the Dr. put it, there was something on the ultrasound that they don't ever want to see. There has been damage from the bleed. The placement of the damage will possibly if not likely cause problems with motor skills affecting the lower extremeties such as the legs. There was no need to verbalize what that meant so we just left it at that. He is still not eating what he should be eating at 3 weeks. They are going to attempt a bottle today to see where we stand on the suck, swallow breathe technique. The decision today is to very slowly increase his feeds now instead of the rapid rate in which they were trying. They had to knock him back down to 20 CC's every 4 hours. This is a concern but we are just not sure the cause at the moment. The severity of his infection at birth and the blood pressure issues he had could have caused some digestion problems or it could be his head.

It has been a long road and the Dr. wants me to prepare myself for a long road ahead. It looks like everything we face will be a challenge. There will be many Dr. appointments and many complications ahead. I saw another baby graduate from the NICU today. Many babies have come and gone while he has been in there and it is so very hard not to be discouraged. Even Dr. Gloom is tired of the bad news. He volunteered to change shifts with the other Dr. so he wouldn't have to be the one to always deliver the bad news.

Sabrina

Day 20

This weeks head ultrasound was performed this morning. I will find out the results tomorrow from Dr. Gloom. I dread getting test results. They increased his feeding to 24 CC's. They also attempted decreasing the intervals from 4 hours to 3 hours. Unfortunately that didn't go over well so he is back to every 4 hours. I am not sure what effect that hour will have on the next steps of progress such as bottles but it certainly doesn't help matters. Hopefully we will have less disappointing results from this head ultrasound. I am not holding my breath. I have found that expecting what I think is the worst has made the bad news a bit easier to swallow.

Sabrina

Day 19

Today was a bit better. Korbin is digesting his food fairly well. He has been bumped up to 20 CC's. No word from the neurologist again today. They will be doing another ultrasound either Thursday or Friday. I received the results from the eye doctor today. So far, his eyes look good. They are not fully developed yet and he informed me of what problems they look for but at this point, it is getting really hard for me to absorb all of the information about all of the possible problems we could face. They will probably check his eyes again on Monday. The days are quickly turning into weeks and it seems like we are really no closer to the end. Having him home with us is becoming more of a fairy tale than reality. I have watched babies come into the NICU and go hime in the time that Korbin has been in there. I knew we had a long road ahead of us but I didn't imagine the obstacles that we would face.

Sabrina

Day 18

A little relief today. They have bumped him back up to 10 CC's of milk I am assuming every 4 hours. He has been doing okay. No visit yet from the neurologist. They did have an eye doctor come in today and check his eyes. I have to call the eye Dr.'s office in the morning in order to get the results. With the way things are going I am very hesitant to expect anything but bad news. They had to put ete drops in his eyes to dialate his eyes. Oddly, a side effect of the drops is tummy issues so he did have some residual from his feed after the drops. They just put it back but I am not sure if they went ahead and fed him again or chose to wait. Fingers crossed that we get some kind of good news tomorrow even if it is that his eyes are fine but I am expecting the worse.

Sabrina

Day 17

Not much change today. He was not able to handle the 5 CC's yesterday so they started giving him sterile water every hour. The sterile water is supposed to stimulate his gut and does not require any effort to digest. This morning they gave him 5 CC's and let him wait 4 hours instead of the normal 3. Unfortunately, they pulled back the entire 5 CC's. The nurse said that it looks as though he was trying to digest it so they are going to try again and see what happens. I am hoping that he starts being able to digest his food so that maybe one fear will be eliminated. The timing of him not being able to digest his food not only coincides with the fortifier but also with the bleed getting worse. If he starts eating well then I can just assume that it was the fortifier and nothing else. He is up to 3 lbs 10.4ozs but since he gained so much so quickly and considering that he is not eating, the weight gain is probably fluid. When he doesn't eat they have to increase his IV fluids. The not knowing where we stand or where we are going is so hard. I wouldn't go as far as to say I am a planner but I like to have an idea of where I will be from one day to the next. I am completely out of my element being so out of control. I have very little control of my emotions and zero control of Korbin's care. I have found myself compensating in other ways some of which have been productive while others not so much. I am finding out more and more about myself with each passing day. I am being handed challenges daily that I never would have thought that I could overcome. I would not say that I am handling them well but I am trying to remind myself many times a day that God will not give me more than I can handle but I wonder just how much more I can handle. I hope that looking back I will be able to say that this made me a stronger person and a better parent but hind sight is 20/20 so right now, I wonder how I am going to make it through the day.

Sabrina

Day 16

Oh another day! I am just so ready for this to be over. I met with the Dr. this morning. I was looking forward to this meeting about as much as someone looks forward to a root canal. After yesterday, I really did not expect any good news and boy was I right. Turns out that the bleed in Korbin's head has gotten worse. I can't say that I was too surprised with the way the last few days have been. His head has grown some but not at a rate that they are too concerned about. As of this morning, they had not yet fed him. They were doing some blood work and doing an x-ray of his tummy so him being fed today would be determined by those results. Dr. Gloom (not really his name but if the shoe fits) made a point to tell me that the eating issues could be related to the bleed, a possible intestine problem or just being young. The nurses told me that his real thoughts are that he was just not ready for the fortifier but I don't think he gets paid unless he makes me cry so it was imperitive for him to tell me the other possibilities. He did at least follow that uplifiting news with the fact that Korbin is showing good signs such as being nice and pink and being very active. I was able to see Dr. Gloom smile but I think that a smile is such a rare occurance that he probably had to take a break afterwards. Back to the point, with the bleed getting worse, the chances of him being transfered to another hospital has increased. The neurologist should be seeing him sometime next week and she will make her recommendation. However, if he begins to show any adverse signs such as an increased amount of head growth they will have to intervene immediately. The Dr. has already spoken to Dr.s at the other hospital and was informed that they do have a vancancy at the moment if needed. Right now, we are just playing a waiting game. The Dr. at the other hospital and Dr. Gloom have come to an agreement that as of right now, he will be okay to be monitored where he is at. I am making the necessary preperations since there is a chance of a phone call at any time right now. As the days pass and the progress comes to a hault it is difficult not to fear visiting the hospital with every ounce of my being.

Sabrina

Day 15

This whole week has been a constant reminder of the NICU motto of 2 steps forward, 1 step back. It seems to me however that we have done nothing but walk backwards. I did not have a chance to talk to the Dr. today about the ultrasound results but I will talk to him in the morning. Yesterday evening, after a whole day of not handling feedings well, they knocked him down to 15 CC's. He wasn't able to handle that either. They had started putting a fortifier in the milk and they are thinking that he may not have been ready for that. As of midnight, they discontinued feedings all together. This morning they attempted 4 CC's without the fortifier. He had 3 CC's of residual. The Dr. decided to let him rest today instead of pushing him. I am very confused about this since they told me that typically once a baby has ate well for 2 days or so they don't usually have anymore problems. Because of all of this, the hope of removing the IV is gone. They instead went ahead and made another attempt at a PICC line which thankfully was successful this time. This means that he will not have to be stuck so often with new IV's. More dissappointing than not removing the IV is that any hope of trying bottles this weekend is pretty much gone.

There is not words to express the frustration and helplessness that I feel with this backwards momentum. The first week had so many days of forward progress but now, aside from the lack of the ventilator, it feels like we are back at square one and having to start this battle all over again. The proverbial light at the end of the tunnel that I keep speaking of just does not seem to be there. Everyone else seems to be able to see it but for me it is just not there right now. With all of the constant set backs it is just so difficult to see the glass half full when it seems to me to obviously be half empty. It is just such a terrible feeling to feel so extremely helpless to him. To be so little and going through so much....

Sabrina

2 Weeks Old

Each day Korbin appears to be improving. Today, they had bumped him up to 25 CC's with the goal of having him at 32 by tomorrow. With that amount, there will no longer be a need for an IV as long as he tolerates his feedings. He did have his first residual in about 2 days. They chose to just put it back and feed him as normal just subtracting the amount that was leftover from the feeding before. He is still 3lbs 7ozs but tomorrow there will probably be another weight gain. They should be doing the ultrasound on his head again today. If they did that today I will find out results tomorrow. I don't really look forward to those results because I am terrified there will be more issues to deal with. He is looking better every day. They may try feeding him by bottle as soon as this weekend.

Sabrina

Day 13

Korbin was doing well today. He now weighs 3 lbs 7 ozs. He started tolerating the 10 CC's yesterday evening so they bumped him up to 15 today. I was very surpised since he didn't handle the feedings very well for the majority of the day. He will officially be 34 weeks next week so hopefully they will start trying to feed him out of a bottle rather than a feeding tube. I am hoping that he will do well with bottles so we can move onto the next step of him learning how to hold his own temperature. Hopefully his progress will begin accelerating and he will be home soon.

Sabrina

Day 12

My visit this morning didn't last too long. When I got there I was informed that he had just calmed down after screaming for an hour. He seems to have learned that when he is woken up it is time to eat. This morning they were not able to feed him. He had some residual in his tummy and his belly was full but they are attributing this to him not using the bathroom these past three days that he has been eating. Instead of removing the residual, they replaced it and gave him some Glycerin to try and "get things moving". If he is able to digest what is left, they will be bumping his amount up to 10 CC"S.

As his feeds increase, the need for the IV fluid will decrease. Since yesterday's attempt to insert a PICC was yet again unsuccessful, they have just put in another IV. The nurse this morning told me that if they are able to continue bumping up his feeds, they may not even make another attempt at inserting a PICC. When he is able to handle enough food, the IV fluids will stop. I was also told that when he is able to handle more of his feedings and higher amounts, they will then begin to try to see how he will do with a bottle. I am assuming that this will not happen until there is no longer a need for IV fluids. After he is able to take the majority, if not all, of his feeds by bottle, they will move to the next step of allowing him to hold his own temperature.

There doesn't seem to be that many steps left in what is the long process of getting him ready to come home but it does seem that each step will take so long. I am aware that some steps may take longer than others but some days it just feels like there are mountains left to climb and reaching the top is a feat that I am not capable of accomplishing. I know that looking back on the past 12 days there were obstacle that even the Dr's did not think were possible to overcome but the road ahead just seems so long. I am just ready for the day that I am able to say my Little Warrior is home where he belongs.

Sabrina

Day 11

We are on day 3 of Korbin accepting his food!! He is now being fed 6 CC's every 3 hours. He now weighs 3 lbs 6.2 ozs. He is back under the bili lights (photo threapy for jaundice). They said that is because he has not been able to eat so hopefully now that he is able to eat a little it will go away quickly. He is handling the caffine that they give him to control his apnea very well. They will try to have him off of that before he comes home. They removed his IV this morning in order to make another attempt at inserting a PICC. I am not sure if they were successful. They were preparing to do that as I was leaving.

The Dr. has finally received the Neuroliogist's report. She recommended they continue to monitor him and for him to be followed up .. discharge. In order to monitor him, they will measure his head twice a week and he will have an ultrasound on his head once a week. They want to make sure that the bleed has not gotten any worse and they will measure his head to make sure that it is not growing too quickly which could be a sign of a complication of the bleed. They are also monitoring him closely for neurological syptoms such as seizures which could indicate that the bleed has gotten worse or that what is there is causing a problem. So far we have not seen any of these things. The Dr. said that they would not really expect to see any of these issues right now unless his condition has gotten worse. This does not mean that these issues could not present themselves down the line as a result of what is there now. I imagine this is why it will be important that he is followed closely by a neurologist.

Sabrina

Day 10

Today actually brought some good news. We have had 2 days in a row of successful feedings. Korbin has been able to digest 5 CC's of milk with very little, if any, residual (non-digested food). His blood work regarding his infection came back looking better today. I was able to see my little man throw a fit and show the nurses what a temper tantrum looks like. He likes to sleep on his tummy and throws a fit when he does not get his way. The nurse also told me that he does not like to be fooled with. It looks like he is already showing what he is made of and what I have to look forward to when he gets home

Sabrina

Day 9

When visiting the NICU this morning I was able to hear Korbin letting the nurses know that he was not happy. It is reassuring to hear him cry. They removed the line in his tummy7 today and put an IV in his arm. They were going to wait until Monday to remove the line and put in a PICC but his blood work is indicating that there is another infection somewhere. We hopefully know tomorrow what we are dealing with and how to treat it. They have started feeding him again and so far he his handling 5 CC's every 3 hours of a high calorie formula. Hopefully tomorrow we will have a couple more steps forward since it seems we have had our steps back.

Sabrina

Day 8

The motto of the NICU is "2 steps forward, 1 step back". After Alayna being in the NICU, that was a phrase that I learned to hate. It is just so frustrating. Today was a "1 step back" day. Yesterday, they made another attempt at feeding Korbin 3 CC's every 3 hours. He handled every feed well yesterday. This morning, his tummy decided to take a break and pretty much not do anything resulting in the Dr ordering another day of rest. There was no news from the neurologist today. It is so difficult seeing such little progress on a daily basis. I know that he has come such a long way in his little life but it is still so frustrating. It is so difficult to see the light at the end of the tunnel but I am trying to take it a day at a time.

Sabrina

1 week old

I have changed my settings so that anyone can leave a comment or question so feel free.

Well, today's visit was not quite as positive as previous visits have been. I received a phone call this morning from thed hospital. Seeing the number on the caller ID made my heart stop. The Dr. was on the phone asking for permission to insert a PICC line into Korbin's arm. I was expecting this. They are wanting to remove the lines from his belly button and since he is still needing a good deal of fluids and will likely need them for awhile, a PICC line is a better option than an IV which would be replaced every 3 days.

As of yesterday, they have taken him off of his oxygen and he is now in an isolette which is good news. He is still struggling wth his feeding. They were attempting to feed him 3 CC's at a time every 3 hours but he was not able to digest that. Yesterday, they decided to try feeding him 1 CC an hour, every hour and he seemed to do well. They are trying 3 CC's at a time again today.

The results of the head U/S were a bit worrisome. When he was born they told be he had a small bleed that was not that bad. According to the U/S yesterday, his ia a grade 3 on a scale of 1-4, one being mild, 4 being the worst. There is nothing that can really be done about this at the moment but could result in surgery down the road. The neuroligist will be seeing him today. We were told that this could result in developmental problems down the road but that is another "wait and see" issue. The positive of all if this is that the cindition did not get any worse.

Todays goal is just to get him to eat and rest. He looked very peaceful this morning and completely unaware of the fact that his mom nearly had a heart attack this morning and was on the verge of being sent to the looney bin.

Sabrina

Day 6

Today's visit broght more good news. Korbin's white cell count is finally where it is supposed to be. He will remain on antibiotics for a few more days. They will discontinue his photo therapy tonight at 6 which means that his jaundice is now under control. I was also informed that he will be moving from a warmer, which is reserved for the sickest babies to an isolette which is a huge step. He is still struggling a bit with his feedings. They have decided to try feeding him an easily digestable formula for 24 hours. He will also have an ultrasound done on his head today to follow up on a small bleed that was found when he was born. I will know results tomorrow.

All in all, he is doing very well. The nurses have found that he keeps a fairly high body temperature so they are frequently having to take blankets off of him to cool him off and he DOES NOT like that. He was very upset about it today and was showing them that his lungs are fully functioning now! He is getting better and stronger by the day.

Sabrina

5 Days Old

I have started this blog for those who do not have a Myspace and for those who I may not know that would just like to be updated on my little warrior's condition. For those who don't already know Korbin was born 9 weeks early weighing in at a heavy 3 lb 3 oz. We thought he was okay when he was born although he needed a little help breathing due to immature lungs. Unfortunately, we were soon informed that our new little bundle of joy came to us very ill. We were told that he had no white blood cells and were told that his body was extremely infected and was losing a massive battle. Although no one actually came out and said it, Korbin was not expected to make it through the night and that he was no longer stable enough to move if that became necessary. We were thrilled the next morning to see a surprised Dr. come into our room and inform us that although our baby boy was still very sick, his body had decided to fight. We know that it was by the grace of God and all of the prayers that this little baby received that he is still with us today.
That brings me to today. He is continually improving. After yesterday's day of rest, this morning he was strong enough to be off of the ventilator. They are slowly trying to get his little tummy to start functioning properly but he is slowly beginning to be able to handle small amounts of food via a feeding tube at a time. As of today he is back at his birth weight. I was able to hold my little man for the first time today which surely God knew I needed after a small break down last night. He is also still under photo threapy but should be off of that by morning. I also got to see his beautiful eyes for the first time today. He has also decided to become very opinionated about wet diapers (can you imagine, one of my kids opinionated )
He is very beautiful and will probably be forever known as my miracle child. I was told months before he was born by my Aunt that this baby was going to do special things. So far in his short life she has been proven right. He has had people who do not usually pray to pray and has formed bonds between family members that was just not there before. My little man is a fighter and I look forward to posting more progress!

Thank you all for your prayers!


Sabrina