Thursday, February 25, 2010

{Got Milk?}

This big guy has been my constant companion for about three months now. He follows me just about every where I go. VERY loyal :) This is not something I've had to do before, so it was unchartered territory for me. I do have to say that:

Lots of work + baby in NICU + dedication =
lots of milk for my baby boy

This a 6' tall x 3' wide freezer FULL of milk
ps.....this doesn't include the milk he's already been drinking or the milk in my in-laws freezer. The supply will diminsh before we know it I'm sure.

Tuesday, February 23, 2010

Our Little Angel Boy

That's all we're mainly doing now.
He has to have f.o.u.r.t.e.e.n STRAIGHT days
of negative results when looking for bacteria from the infection.
When we have just that, he can have the shunt put back in.
Until then, we are still ......

Thursday, February 18, 2010

Have a little Faith...or A LOT

It's been a week now since Lincoln was transferred up to Primary's. The days have gone by rather quickly. He has made some big changes. Lincoln was taken off the ventilator on Monday. They put him on the nasal cannula and was taken off of that after one day. It's a little ironic that at the beginning of all of our problems with Lincoln in pregnancy, our main concern was his lungs. Now, that has been something that has proved to us there need be no concern!! He is doing pretty well for the most part. He is seven pounds three ounces. He wakes up STARVING (and that's an understatement). He is being fed 30 mls by a bottle every feeding every 3 hours, which is a huge step. Clinically and physically he is showing all the signs of improvement and that his body is fighting off this infection. The labs, on the otherhand, are not one hundred percent convinced that this is the case. There are a few odd-findings and indication that the infection is lingering on. They upped his antibiotics and added an additional one. I am a STRESS case (and that ALSO is an understatement). He's still acting quite irritable, but I attribute that to two different things: 1)the second antibiotic they started is known for being irritable to the veins 2)he has the external drain for his hydrocephalus which means he probably has a HUGE headache.

I break down every now and then. I just want Lincoln to be things were before the infection. He was doing so well!! I'm exhausted, we're all exhausted. Like I've said before, I just wish I could wake up from this nightmare. I hid myself under the covers on my bed this morning after speaking with his nurse. She said nothing too bad, just that they're still not sure the infection is gone. As I lay there feeling sick to my stomach, I received a knock at the door. I have a sign on my door that says 'No Soliciting' and could see it was a couple of ladies. I decided to answer it thinking it could be a couple of my neighbors. Nope, it was the Jehovah's Witness'. I've often found myself trying to place myself in a non-mormon's shoes when they come to the door. I think to myself how would a 'mormon missionary like to be treated as he/she tried to share a message.' I always give them my time. The message they shared was about making time in our day to read the bible. I thought this was definitely a message custom-made right for me. They asked why most of us don't get to reading the bible in our daily lives. My response was 'Life just gets in the way. We get busy with day to day tasks.' They agreed. They left and I found myself picking up my scriptures. I read a few different chapters in the bible then I randomly flipped to Doctrine and Covenants chapter 35 verses 8 through 12 in the Book of Mormon and this is what I found:

"8 For I am God, and mine arm is not shortened; and I will show miracles, signs, and wonders unto all those who believe on my name.
9 And whoso shall ask it in my name in faith, they shall cast out devils; they shall heal the sick; they shall cause the blind to receive their sight, and the deaf to hear, and the dumb to speak, and the lame to walk.
10 And the time speedily cometh that great things are to be shown forth unto the children of men;
11 But without faith shall not anything be shown forth except desolations upon Babylon, the same which has made all nations drink of the wine of wrath of her fornication.
12 And there are none that doeth good except those who are ready to receive the fulness of my gospel which I have sent forth unto this generation."
My goodness is this speaking to me!! Once again, pleading for me to strengthen my faith in Him. How ever-present is our Heavenly Father in our lives if we just seek Him! I am so grateful to have all of this knowledge at the grasps of my finger tips daily! If I just have faith He will answer my prayers! The very least I can receive from any of this .... is peace. He may not answer our prayers in the order or timely fashion or the way we want Him to, but He is listening, He is there and He will fill our lives with comfort and peace.

And for now, this is what helps to keep me sane:

Tuesday, February 16, 2010

Needed a good laugh

Alrighty then....!!
Our nurse from the other night told us about this video on Youtube. If you understand this NICU lingo at all, you'll get a pretty good laugh out of it. We all know I definitely needed to smile!

more progress

Lincoln is coming along. The swelling is pretty much completely gone. They took him off of the ventilator after feeling it was hindering more than helping him. He did so well that by 7pm they took off the nasal cannula and he was completely on room air. He has had a few issues with not digesting all of his feeds so they're moving slowly with that. His full feeds were up to 50 ml's before the infection/surgery. Now they're at 17 ml's. Scott and I went in for our visit last night and he was very anxious. He was sucking on a binky VERY eagerly. His heart-rate was a bit high too. When we got in there, we held his hands and sang him some songs. He settled right down and his heart-rate lowered also. He may either be in a bit of pain from the infection still....or I'm thinking he is STARVING.
I guess if I had to think about it and say there was anything good that came from this infection it would have to be that he has his own room. They put him in isolation because the staph infection is highly contagious. It's definitely a lot quieter in our own little room though. When we enter his room we have to put on a robe and gloves.
I get a little frustrated at times. I know that it wasn't intentional that he got the infection, but if he wasn't in the hospital...chances are he wouldn't have contracted it. There are some big repercussion that come from this infection and the antibiotic used to treat it. There is possible hearing loss, neurological issues, and other side effects. I haven't held him since Thursday morning right before transport. That was a short but sweet time for us. But for now we'll try to concentrate on the positive. We'll try to focus on what we're dealing with now. I must admit, it's a little difficult at times. Right now my biggest concern is that he is so uncomfortable and I'm an hour away. It makes me sad to think how agitated he is and there's only a small window of time through out the day to feel like I'm making him feel at ease. I thought this NICU roller coaster ride was pretty much over..... I want off! Of course, I want Lincoln to not have to be on the ride anymore either.
So, it's up to me to now cast away my fears, pain, anguish, worries and on and on and on. I'll cry to Jesus, sing to Jesus....Fall on Jesus and live! Afterall, faith is the big key here.

Saturday, February 13, 2010

Calling on more PRAYERS

So, our little guys bad night turned into a living nightmare. After recognizing that Lincoln clearly was in pain, the doctor ordered some labs. Everything came back fine. He would continue another set of labs six hours later. The second set of tests were just the beginning of our world turning upside down......again. We were getting SO close to Lincoln coming home!! I received a call from the doctor Thursday morning informing me that the labs confirmed he had a very serious infection. Just to give you an idea of how it took a turn for the worst, his first set of labs showed he had approximately 17,000 white blood cells. By the second round of labs that number had diminished to 3,000. White blood cells are essential for fighting off illnesses. So, at this point the illness was winning. The doctor let me know that they weren't concerned for his life, but that it was a very serious infection and he was very sick. Scott decided to head over to the hospital with his little brother first thing in the morning to give Lincoln a priesthood blessing. When he got there, Lincoln had already started to swell a bit and was red on the right side of his body from head to tummy. I went to the hospital a short time after and noticed he had swollen a great amount. They had been giving him pain killers all through the night to dull the pain. They were thinking it could have been a shunt infection, but weren't certain and were still trying to figure it out. Some more labs came back indicating it was leaning more towards being a shunt infection. They decided right away to have Lincoln transported up to Primary Children's so they could follow the infection more closely and possibly operate. In the meantime, they had started antibiotics to hold whatever he was fighting at bay.The neurosurgeon looked at Lincoln and decided they would most likely operate friday morning. Scott and I arrived at 7:45 am to only find out that we had barely missed the surgeons. They decided he wouldn't need to be the first for surgery and would be third person in line. We were quite disappointed. The swelling had increased even more so and I was getting extremely frustrated. We knew the shunt was part of the cause of the infection and knew it needed to be taken out. I knew I couldn't judge the other cases without knowing what they were, but Lincoln definitely seemed like an emergent case to me. We stuck around to visit with him for awhile then, at 9am, decided to go to the cafeteria for breakfast. As we were getting in the elevator we heard a page for someone with the last name of Brown, but didn't hear the first name. We continued up to the NICU. We ran into our surgeon in the hall and he informed us that Lincoln was being prepared to be taken into surgery right away. He said when he came up to examine him, he decided that this could no longer wait and the others receiving surgery would have to be pushed back. We were VERY happy to hear this. I forgot to add, Lincoln was put back on the ventilator for his ride back up to PCMC. They thought it would be a good idea to do it then since he was being a bit apnic and would have to have it for surgery anyway. The surgery in itself didn't take very long. The surgeon reported back to us that the surgery was a success and they got the shunt completely out. They described to us what we had suspected...there was major infection. Under the shunt itself it was pretty clean, BUT when they pulled the tubing out it had green mucous all over it! That can not be good!! For two weeks he has to be on antibiotics to make sure the infection is clear before they can put another permanent shunt back in. We were hoping they would be able to take him off the vent not long after surgery. Well, that didn't happen. With him being so sick, he may be on the ventilator longer than anticipated. How long will it be?? We don't really know, it will depend on Lincoln and his desire to breath. It will also depend on his health. He has been having great bowel sounds, so they decided to start some feedings. Poor guy only gets 5 ml's of milk every 3 hours for now. Hopefully that will be increased soon.
Today was another hard day for us. I called in this morning to check on him. The nurse informed me they found out what his infection is. The infection is MRSA (HA-staph infection). This is a VERY serious infection. Luckily they caught it and started antibiotics right away. We're not necessarily out of the woods yet, but he has shown response to the medication. His swelling has started going down and his breathing has gotten a little better. He must be on the antibiotics for 21 days. This means until they get multiple clean labs, Lincoln can't get the surgery for his shunt, which puts off his homecoming.
I got extremely worked up on the way to the hospital this morning. I let my thoughts consume me and could only think of the worst....that this could turn fatal. On the 27th of this month, Colten will have been gone for a year. I couldn't imagine loosing two babies in the span of one year. Scott and I were talking in the truck. We agreed that both of our hearts were in our stomachs. There were a few moments of silence between us. I had an overwhelming feeling of calm come over me. I felt so extremely relieved and was even able to smile a little. I then decided to share this little piece of news with Scott. His response took me by surprise. He said that he felt the exact same way at that exact same time. This was such a touching moment for both of us.
Our visit with Lincoln was wonderful. He actually opened his eyes and made eye contact with me a few times. I knew my baby was in there somewhere, just very confused and sleepy. I shed a few tears for him just trying to imagine all he has gone through. A friend brought up something very profound. She made me see that it was no small coincidence that Lincoln was brought into our lives and family. Our Heavenly Father knows all and has a plan for all of us. It is true He will give us no more than we can handle. I KNOW Lincoln will pull out of this and will come home soon.
Thank you for all of your love, support and prayers!! We are truly blessed in many MANY ways!

Thursday, February 11, 2010

He had a bad night...

We're not sure exactly what is going. When I went in for my visit yesterday afternoon Lincoln was very sleepy. Two of the times the nurse had taken his temp it was up a little bit, but not too concerning. By the time I got there it had regulated again. Now, mine and Scott's visit last night was a whole different story. It kind of started out the same....he was a bit sleepy. But right away when I tried to feed him, we noticed he wasn't himself. He would cry out, but then I would quickly be able to calm him. He had a little bit of a rough time trying to relax and just eat. When we picked him up to put him on the scale he Freaked out. After that, he couldn't stay calm. They ran a bunch of tests and everything came back negative. He would wake out of a dead sleep and cry out like he was in pain. We knew something wasn't right. We called through out the night to check on him and found that he had calmed a little compared to when we were there, but he was still uneasy. They ran some more tests and got back the results this morning. He has a major infection, they're thinking it's in his abdominal area. The doctor said he didn't want to scare us, but it's a pretty serious infection. They're not concerned for his life at this point, but he could have the potential of being put back on the ventilator and becoming very very sick. They are putting him on antibiotics right away and they'll be doing a spinal tap. His white blood count is extremely low which means he's really trying to fight it off, but can't. Scott and his brother are on their way to the hospital to give him a priesthood blessing. Please pray for my little angel to get through this.

Tuesday, February 9, 2010

Lincoln is Three Months Old!!

Lincoln turned three months old today! I can't even believe how the time has gone by. When we were in our first few days, February felt like a couple of years ahead of us not a couple of months. Now that we're here....we can hardly believe it.

I took the kids to Build-A-Bear Workshop to choose a bear for Lincoln. How fitting that they chose this little bear with stitching and a heart on his chest! We also decided it would be somewhat of a tribute to get matching 'scrubs' for him and his bear, to all those who have taken such great care of him since his grand entrance into the world.

Our NICU photographer had to take another great picture of him with Flat Stanley. The second we saw Lincoln's doctor hat, we thought of Ryan right away. He was one of the great respiratory therapists that helped our little guy with his superman lungs!

Sunday, February 7, 2010

Ninety One

Luke and Lincoln could be twins as babies!!

It's been ninety one days since we were first intimately introduced to the NICU. At times the beginning feels like a distant dream. Like we couldn't have possibly lived through those first couple of days/weeks. The excrutiating ups and downs seemed so unbearable, but somehow we got through them. We still have a few bumps here and there, but they're in no way comparable to the mountains in the beginning.

At night, I often find myself pleading to Heavenly Father for my baby boy even after I've layed my head on my pillow and closed my eyes. I've always made it a point to recognize my blessings and show my gratitude, but in the last couple of months I have been much more aware and much more sincere.

The one big thing that lingers in my mind will I ever re-pay all of those who have helped us through this trial??? I am so humbled to think of all of the selflessness on our behalf. The meals, concern, hours of babysitting, encouragement, medical care, advice, many acts of kindness.

To give you a little insight on exactly how miraculous it was to get Lincoln back to UVRMC- My insurance denied the request to have him back-transported. Without them paying for it, that meant we were stuck up at Primary's until he was discharged for good. After hearing wind of this, the doctor's, a few nurses, and the care manager in the NICU at UVRMC, were trying to figure out how to make it work. We got a call the morning after the request was denied to tell us he was now being transferred. After Lincoln's arrival to UVRMC, Scott and I went in to visit him. We ran into the main doctor in the NICU in the hall, Dr. Steve Minton. He greeted us with a smile and a hug then informed us Lincoln made it "back home." He said "you know, the insurance wouldn't pay, so we're covering the fee for the back-transport." We were in awe. I responded "Oh my goodness..we are so grateful and forever indebted to you." Dr. Minton just smiled and replied "I know." Can you BELIEVE that?? He is very family oriented and that emulates within his whole staff. They saw the importance of us being five minutes away rather than sixty. Not only was the round trip drive two plus hours, but the whole ordeal would be at least five hours a day.

So, many of you may be wondering what Lincoln acts like. Afterall, he is three months old. Well, he is actually just like a newborn still. Yes, he was born three months ago, but he has spent these last three months growing, fighting off major issues, and developing as a fetus would be...just outside of the womb. So, his "adjusted" age would be calculated from his due date. That would make him six days old. It will always be somewhat confusing.

Lincoln has drastically changed our lives. I call him my Little Bear. He loves to growl and it reminds me of a cute baby bear trying to communicate with his own foreign language. He continues to get better and better everyday. His blood pressure has been high since his return from Primary's. They're not quite sure what the cause is, that's something they're still working on. He is also still on room air, no nasal cannula, and is doing extremely well. No longer are our eyes glued to the monitors watching his heart-rate, respiratory rate, and oxygen saturation for any slight change. We're still working on eating. He shows all the healthy cues and will even breast/bottle feed for awhile.

Home is calling us. Home is where our heart is and where we want Lincoln to be. It's only a matter of time. His room is almost already. The bassinet is empty, waiting by the side of my bed. .....His family is ready and waiting.

Tuesday, February 2, 2010 happened...

The clouds parted, the HEAVENS opened, and we got the approval for the 2ND time, for Lincoln to be transferred back down to our hospital!! I can't believe this is really happening. After speaking with my insurance company MANY times I was under the impression it would be covered. On my last phone call to them they informed me it actually wouldn't be approved. I was super upset, but knew that it was what it was and I had to deal with it. I cried, then I got over it. Just when I had begun to adjust to the thoughts of what my new "hospital life" would be like, I got spun in a different direction again and found out the transfer WOULD be able to happen!

Good news on a good day :) Today is Lincoln's due date. Does it make me sad? No, but if I were in the same frame of mind when he was first born it would make me super sad. I am a little disappointed that Lincoln hasn't made it home by his due date, but as a friend once told me "This is Lincoln's story and it's going to be a beautiful one." [yes M, you said it....HUGE impact on me:)]. He's his own person and he will make it happen in his own time. Lincoln had a ROUGH start and TWO surgeries. When we had been working on breastfeeding for a week, I was starting to get a little frustrated that there wasn't a ton of progress. When he was wide awake he was definitely interested and actually did pretty well. But it didn't take very long until he was asleep again. I had a talk with one of the nurse practitioners and mentioned maybe there was more things we could be doing to make him be more awake, this was when he was around 36 weeks gestation. She kindly reminded me that "maybe we should cut Lincoln a little slack. He technically wasn't supposed to be born for another 4 weeks or so and he was a very sick little boy at birth. Also, with his condition with his head, he probably didn't feel very well and didn't feel like eating." I quickly came back down to earth and realized all of that was very true. With Hydrocephalus, there is a lot of pressure on your head because of the extra fluid. In turn, that would definitely make anyone not want to eat:headaches, nauseau and sleepiness??? Ummmm ya...I wouldn't want to do ANYTHING but sleep!

So, here we are today....waiting for Lincoln to be transported back by us. He is off of the nasal cannula and doing well with that! The most important step to be accomplished in order for him to come home is upon us. He has to take his feeds 100% orally. No more feeding tube for my boy! We can do this....we're so close I can taste it!!!