I Can't Believe My Baby Is Going To Be ONE!

Here we are in August and all I can think about is where we were at this time last year. I start to remember the contractions and cramping on my 21st birthday, a Monday, where I stayed overnight in the hospital to be monitored. I remember being sent home and thinking that everything was fine. I remember waking up Wednesday morning with the gush of water as I rolled out of bed. I remember being so confused and being in complete denial that something was wrong. I talked casually to my mother in law while I packed my purse and my oldest son's backpack up as she waited in my living room to take me to the hospital. I remember the calm before the storm. I didn't panic, I didn't rush, I didn't fear the worst. In my mind, it was something that could be taken care of by making a little trip to see my doctor. 

Then they confirmed that my water was ruptured. I remember it like yesterday. The calm was no longer present and full on panic rushed in as doctors, nurses, and whoever else barged in hooking me up to this, checking me out for that. I couldn't take it. The room got blurry as I cried and cried. I ended up just closing my eyes trying to collect myself but it was pointless to try. It was all too real and I wasn't prepared for it. 

I go through these moments over and over again. And as I remember these moments I am bombarded with every emotion I felt. I know that we had a happy ending to our NICU story but it doesn't take away the desperation that we felt at the time. So many tears. So many fears. So many sleepless nights. 

One of the things that sticks with me the most is the fact that the worst day of my life is now Blake's birthday. The day you give birth to your children is supposed to be one of the happiest days of your life. His birthday was the opposite. I wasn't sure if my baby was going to even survive. The neonatal specialist made sure that we knew that the odds were against him so that we didn't build false hope. We hung in the moment. Never knowing whether to grieve, or to think positive and give us ourselves some sort of hope. I remember people asking me how he was doing and for the first two weeks or so I didn't even know what to say.  

This is when I reintroduced myself with God. All I did was pray. And I wholeheartedly believe he listened. My little one pound, eight ounce baby is the definition of a miracle. He defied all the odds and is thriving. All I would think about when he was in the NICU was what his future would look like. After seeing your baby hooked up to so many machines, on a ventilator, on oxygen, wires, IV's and whatever else its hard to picture them without it all. I was a nervous wreck about bringing him home and not having a nurse around 24/7 to keep an eye on him. But we managed. And I think we did a pretty good job if I must say so myself!

Even though the beginning of Blake's life was rocky, we all grew from it. Anyone who knows Blake's story is touched by it. He changed our lives and made us better people. We were so tangled up in today's world with all its materialistic objects and technology that we didn't focus on what was really important in life. He made us thankful for all of our blessings, big and small. He gave me hope and showed me that I had more strength than I knew I was capable of. He is small but he is mighty and he changed the world around him. 

Happiness is an understatement when describing our family home life. Our house is filled with laughs, messes, and love. There is no greater joy than seeing your children grow, learn and live a life full of imagination. Both my boys light up the house with their silly little smiles and I am constantly reminded about how lucky we are as a family. 

Blake is doing absolutely amazing. Looking at him now, you'd never guess he has spent the first 126 days of his life in a NICU. He is the happiest baby I have ever had the pleasure of knowing. The only time he really fusses is if he is hungry or sleepy. Blake is always smiling. And he is extremely curious of the world around him. He is very mobile now. Not quite crawling yet, but he loves scooting around on his back, rolling all over the place and is working on army crawling. He has physical therapy once a week and a weekly visit with his developmental specialist. But that is the extent of our medical necessities. He is right on time for his adjusted age of 8 months. Oh and can this boy eat! He loves food! He isn't eating solid table foods yet but if its pureed, he'll eat it! Typical happy, growing, healthy little boy. 

Ashton loves his little brother. They crack me up when they play together. Blake is always trying to scoot over to where Ash is and hang on him. He'll tug and pull at his big brother and Ash totally lets him. Ashton will get on the floor with him and just play with Blake. Again, I can't express how blessed I feel as a mother who gets to watch her two boys build their bond. They are best friends!

As Blake's birthday approaches I have such a mix of emotions. It's so bittersweet for me since I can't grasp the fact that he will already be one when he should only be eight months. But I am so thrilled that we made it here. I think back to where we were and I can't imagine going through it again and I think about all the families who are currently where we were last year. Our NICU story has ended but for some it has just begun. So to celebrate all of Blake's accomplishments we are putting together care packages for the NICU families. We received a few little care packages during his stay and they really mean all the world to you when your life seems upside down. We just thought it would be a great way to give back since we have been so incredibly blessed. We are taking donations and if you are interested in donating some items we would definitely appreciate it! I'll post an address and list of suggested items bellow. 

This last year has definitely been a trying. We've shared heartache, fears, hope and the wonderful sense of relief. We've learned more about ourselves through this life lesson. Our family has never been closer and we are so elated that we had such a happy ending to our NICU ordeal. The different emotions that surround this month to me can be hard to sort out but above all, I am thankful. I'm not sure that the month of August will get easier to deal with as the years go by but that's okay. It reminds me to be humble. It reminds me to take a look at my life and our life as a family and just plain ol' be thankful. 

**Follow the progress and get updates of the NICU Care Packages on Facebook at:

https://www.facebook.com/pages/Blakes-Birthday-Care-Packages/486402644763378

**Donations can be sent to:

Blake Jaycox

PO Box 11146

Glendale, AZ 85318

**Cash donations can be sent to my Paypal account via demitrialynn@gmail.com

Items needed for NICU Family Care Packages

* hand sanitizers

* non scented lotions

* children's books (for parents to read to babies while bedside)

* crossword or puzzle books

* pens

* notebooks/journals

* baby blankets

* small stuffed animals

* Preemie outfits

* Hats/booties

* Starbucks gift cards (5-20 dollars)

* chapstick

* Kleenex packages

* Snacks

* Antibacterial wipes

* tea bags/single serve coffee or hot chocolate

* granola bars

* Gas cards

* magazines

* vitamin waters

* disposable cameras

* restaurant gift cards

* Etc.

The Birthday Prince

Can't believe he will be ONE!

My beautiful baby

Brothers and Best Friends

Brotherly love

The cutest super heros you ever did see!

March for Babies - We need your help!

I haven't written in quite some time. Needless to say, I've had my hands quite full! We've faced several obstacles in the past few months but we got passed them and are doing very well. I'll write a quick update below but the main purpose for me writing this post is because I want to ask you guys for help.

When I first was emitted in the hospital after my water ruptured, I was scared. I was scared, worried, emotional, nervous, you name it, I felt it. I wanted answers. I wanted to comfort myself by finding factual information, inspiring personal accounts, and just hope. But I was afraid to look online because you can find some horror stories and worse case scenarios and I just wasn't ready to face another person's pain and grief before I could handle my own. But I needed to know. I needed to learn about how common prematurity is, I needed to learn about what I could be facing without all the pain attached to it. I needed to know what programs, therapists and specialist were available to help us. I just needed to know that we weren't alone in this terrible situation and there was hope and support there for us. So, the first organization I turned to was the March of Dimes.

The March of Dimes does so much for prematurity as a whole. They conduct research to create better technology that helps these miracle babies progress. They fund classes and programs that help bring awareness to prematurity and how to prevent it. They help families cope and deal with what they have been dealt with. Their campaign has a powerful impact on bringing prematurity awareness to the forefront so that people know that they are not alone. They are doing everything they can to lower the numbers and hopefully one day prevent it all together.

I can't express how thankful I am to each and every one of you who followed and supported Blake's progress. It means the absolute world to me knowing that he has so many amazing people who love him and are rooting for him. Many of you have asked me how you could help, so here is your chance.

We are setting  up a team to walk and raise money for the March for Babies walk in April. We are aiming to raise 1000 dollars that will be donated to the March of Dimes Foundation in hopes that they will continue to help other preemie families just as they have helped mine. We are walking in honor of Blake and all he has been through. If you want to join our team, we would love if you walked beside us! If you are unable to attend the walk, please help by donating and helping us reach our goal.

To join "Team Baby Blake" or donate to our cause (or both), please go to the following link.

http://www.marchforbabies.org/personal_page.asp?intnav=MFB_PRV_HDR_PRPGS&si=831ACD5C-4989-4CD8-BA77-2B10546C4E97&prefill=

Every penny counts and it is an amazing cause! Blake is the strongest little guy I know. He has been through so much in his short life and he is a proven real-life miracle. But we have all your support to thank for that. So help us support all the other babies needing a prayer, needing love and support. Help us show their families that they aren't alone.


As far as an update goes "m going to sum it up quickly. Blake is doing wonderful. However in January, we noticed his head was a bit larger than it should be. In fact, it grew three inches in just one month. His eyes also were darting down and he couldn't look up. After a doctor's visit and a referral to see the neurosurgeon, he was diagnosed with hydrocephalus which is the build up of fluid in his brain. He was taken in for surgery the very next day where they performed a procedure called and endoscopic third ventriculostomy. Meaning they drilled a hole through his skull, drilled a hole through the blocked passage, opened it up and sewed him back up. It was a very quick procedure with a 50/50 chance of being either successful or failing. So far, the ETV seems to be holding up and doing its job. We go back in a month or so for a MRI to double check and make sure the passage is still open.

He also was diagnosed with having a tongue tie. But that was corrected just this last Tuesday and he has been doing really well since!

I'm sorry the update was really short, like I said, my hands have been extremely full and I have been on the go non stop with the kids and appointments. And speaking of kids, Blake is waking up and I need to go make a bottle! Thank you guys again and I hope to see you at the walk!

December 29th, 2012

It has been a yucky few days. Christmas came and left and all that remains is the coughs, stuffy noses and ear infections. LUCKILY, Blake doesn't have any of the above. It started with Ashton, then Patrick got it, and even though I quarantined Blake and I in my room and guarded the door with a can of Lysol, I still managed to get sick. That's twice this month that I have gotten some sort of bug and I never get sick! Thank goodness my mother in law went unscathed as far as germs go and has been able to take over baby duty while we get better. I have been a nervous wreck about Blake getting sick so even though it kills me not being able to care for him, I'm just glad I can keep the germs away from him by keeping myself away from him. My symptoms seem to be easing up, Ashton is on antibiotics for his ear infection and Patrick went to the doctor again this morning to see if he can get something for himself. So hopefully this house will be sicky germ-free soon.

Aside from all that, Blake has been doing great. He loves to be loved. You could hold him all day and he would just be in heaven. But after four months of being in a NICU bed and being poked and prodded all the time, I think he deserves to get whatever he wants. Even if that means he wants to be held 24/7. Thank goodness for the Moby Wrap that I recently bought! It will definitely come in handy. We have been busy setting up appointment after appointment. Between the home health nurse, developmental therapists, pulmonary specialists, the clinic for his synagis shots and of course his pediatrician, we have a busy schedule for the upcoming months. But it is so worth it. It is very comforting knowing that we have so many eyes on watch for Blake.

Not much else has been going on. Just us trying to battle these nasty colds. Can't wait for the day when we are all better and won't have to worry about breathing or touching Blake. I am not very happy that a week after getting Blake home, we all get sick. Not how I planned but of course, nothing ever goes as planned! As long as Blake doesn't catch anything, then I am happy.

Blake has an appointment with his pediatrician on Wednesday for a weight check so I will update you guys then to inform you with how much he has grown! I feel like he has gotten so much bigger just in this last week! He finally fits in newborn clothes. Some of the little outfits are a little too long or a little too wide but we have found a few NB outfits that fit just right. That all on its own is a milestone. When Blake was born at only 1 and a half pounds, it was hard to picture him in regular baby clothes. And here we are finally able to start putting him in Ashton's old clothes! I love that he continues to grow and grow. Such a little miracle baby!

Our first picture as a family of four <3

 

 

Home Sweet Home!! December 26th, 2012

Blake has been home a week and I have cherished and thoroughly enjoyed every minute of it. I have taken forever to write this post because I have had my hands pretty full juggling both boys, medical equipment, appointments, sleepless nights and the chaos of the holidays. Even when I get some down time, I am way too exhausted to type up an update, let alone even think of something intelligent to say. But I was able to sneak in a two hour nap earlier so I think I have enough energy to finish a post finally!

So backing up to the night before we brought Blake home, Patrick and I stayed the night at the hospital for a trial run in the "nesting" room.  The company who supplies us with Blake's home oxygen tanks and apnea monitors met up with me earlier that day to show me how all the equipment works and made sure I knew each piece like the back of my hand. Staying the night would help us figure out all the equipment by ourselves that way if we had any questions, there would be a nurse near by to give give us a hand or answer any questions. The "nesting" went great! Blake was super easy. Only fussing when he was hungry and sleeping in between feeds. I was a little nervous about everything but having the opportunity to take care of him with a nurse just down the hall really eased my mind.

When the morning came, I was beyond excited. Luckily, Blake had his primary nurse the day of his discharge. I would have been really sad if we didn't get to see her before we left. Kathy, his nurse, went above and beyond for our little boy. She was basically Blake's NICU mama and I am so thankful that she was his primary. Not only was she there to answer every one of my million questions, but she was like my own little therapist when I needed to vent or talk about any fears I had throughout this whole journey. She saw us through all the ups and downs and she went out of her way to make sure that we were okay. You can tell that she genuinely loved Blake and knowing that made it a little easier for me to leave him there day after day for the 126 days of his NICU stay. I really hope she knows just how much of a difference she made in our lives and I am so thankful for her!

Discharge took a few hours but that was okay with me. I wanted to make sure I had every question answered before we were finally on our own. I had been fantasizing about the day my little angel could go home and the day was finally here. For 126 days, I walked up to the hospital entrance and saw new mother's being wheeled out to their cars with their newborn babies buckled into their car seats. I walked through the lobby and saw the ecstatic family members waiting to welcome the newest edition to the family. I walked past the Stork's nest and saw all the beautiful chubby pink babies laying in their little beds while more family fawned over them through the glass windows. And everyday, I imagined what it would be like when it was finally my turn to take my baby home. What it would feel like to see my baby in his car seat as we were wheeled down to our car. How it would feel to have people congratulate us on how far Blake has come. And finally, I always imagined how amazing it would feel to finally walk through our front door, set down our bags and for the first time in 126 days, have my family be together under one roof.

As we waited for the paperwork to get finished, all the nurses, doctors, and therapists who ever cared for Blake at one point or another came in to say their goodbyes and congratulate us. They were so happy to see him finally be well enough to go home. All I could do was smile and be thankful.

When it was finally time to leave, I was brought a wheel chair and they sat Blake, who was all cozy in his car seat, in my lap and we moved towards the door. All the emotion that I had felt through this 126 day journey flooded to the surface and I became a blubbering mess. I was so happy to finally leave with my baby but I was so sad to leave all the NICU staff behind. They all became such a huge part of my life and I was so thankful for each and every person who helped Blake get to this point. I think I even saw a few of the nurses and staff members get a little teary eyed as we all said our goodbyes. They told me to keep them updated with his progress and to visit them after RSV season and of course I agreed. And when the rounds of hugs and best wishes ended, the doors opened and Kathy wheeled us out to meet Patrick at the curb with our car. I don't think I will ever be able to express how appreciative I am of all those people. They saw me at my worst and were there to share every one of Blake's milestones with us. They truly became apart of our family and they will forever be in my heart.

Saying goodbye to Kathy was even harder than I had thought it would be. She parked us at the curb and helped us load Blake and all his equipment into the car and we did a big group hug before saying our goodbyes. Everything seemed to happen so quickly and before I knew it, we were driving away with Blake. Finally.

The first day was a little rough. The medical equipment company delivered the rest of Blake's tanks after we got home. He now has one huge stationary oxygen tank next to his bed in our room, a medium sized tank that can be wheeled around on a little cart and several smaller backpack sized tanks to use for travel. He also has an apnea monitor that straps across his chest and alarms very very loudly when he has a drop or high raise in his heart rate or he stops breathing. Luckily, the only times it has gone off are when he cries himself into a fury and when the belt shifts a little bit to the point where the electrodes aren't in the correct spot. I usually only use the monitor at night when we are sleeping or the rare occasions when we have to leave the house, like to his doctor appointments. Other than that, I just have to worry about lugging around his oxygen when we move about the house.

Ashton has been the perfect little brother. He hasn't shown any signs of jealousy which is great because I was really worried about how Ashton may have reacted to sharing his parents. He loves Blake and is always talking about him or wanting to kiss his him or "tickle" his feet. Its very cute and it definitely makes my job a little easier since he is behaving nicely towards Blake.

We have been busy with appointment after appointment. Blake met his pediatrician and she wants to see him every couple weeks for the first few months to keep track of his weight and progress. We have had two home visits from his in-home nurse. She weighs him and just checks up on him. He has gained half a pound already since he has been home which puts him at 6 pounds 6 ounces. And on Thursday, a developmental therapist will be coming to our house to see where he is developmentally and give us some insight as to what to expect from him these next few months.

I think it is finally safe to say that we have adjusted pretty well to having Blake home. I went out and invested in a Moby wrap to carry Blake around in and it was definitely worth it. Blake loves being all snuggled up close to me and it gives me free hands. Speaking of being snuggled, Blake loves to be held. He is a very good baby as long as he is fed on time and held when he wants to be held, which is pretty much all the time. But that is A-okay with me! We have four months of not being held to make up for so I will be more than happy to hold him any time he wants. After everything this poor child has been through, he deserves to be spoiled.

Every time I look at his sweet little face, I am instantly reminded of how far he has come. I could watch him all day and never get bored. Blake has taught me to never take anything for granted. Just four months ago, he was a tiny, fragile little baby with all the odds against him. He was a measly pound and a half and he pushed through it all. His strength is remarkable. I am overjoyed with love and happiness because of this child and I feel like I am a better mother and person because of it. Now that he is home, the weight of the world is off my shoulders and I can focus on being the very best mother to both of my children. Having them both under the same roof is the best feeling ever. My family is my world and I love having us all together like it should have been all along.  

This won't be my last post. I will still update you guys on all his progress. Even though we are finally home, Blake still has many more milestones to reach and we want to share them with you. You were there with us through all the heart ache, therefore, you all deserve to share in on all the happiness as he continues to progress and reach milestone after milestone. Thank you so much for being with us on this journey of ours. Your prayers made a difference and brought our little trooper home. We love you all!

On our way home from the hospital!

Loves to snuggle <3

Brothers

Moby wrap

Cuddling with Daddy

Snoozing in one of his favorite spots!

My little monkey

Merry Christmas!

Fell asleep during tummy time

After bath time

The sweetest little miracle ever!

Quick Update 12-14-12

Quick update!

Patrick just talked to Blake's nurse and the doctors are aiming to have him home by Wednesday! They said they aren't too worried about the heart rate drops because he corrects them all on his own very quickly. He will be sent home with a heart monitor just so we can be aware of it. But other than that, he is doing great! I am very excited!

December 14th, 2012

Today is Blake's last day for antibiotics, thank goodness! He has had such a rough time with his IV's. He's been poked so many times that the veins just weren't holding up. The other day they tried to put a new IV in for over 2 hours. Five different nurses had to attempt (and that was just while I was there) and they had no luck. They ended up giving one of his doses of antibiotics by injection. My poor baby has been through so much! After the 2 hour attempt, he was physically exhausted. He didn't want to eat and they had to put him back on oxygen temporarily while he got his strength back. Even though I knew he was just tired from the poking and trying to fight off the nurses, its still never easy to see your baby regress and need oxygen.

We were expecting Blake to come home on Saturday but that looks like its not happening. I have been fighting an awful cold so I can't be around him until I am 100% better and Blake had two heart rate drops yesterday. Not what I wanted to hear when I talked to the nurses. But they said that he had another blood transfusion and was off the oxygen again (besides when he eats). So hopefully that helps. His nurse said sometimes they can brady (heart rate drop) when they have reflux. They don't really know what caused it yet but they want to keep him and watch him to make sure he is stable before he comes home. He may have to come home with an apnea/heart rate monitor to give us some sort of peace of mind. On the bright side, at least I know I have a few more days to recover from this nasty cold and sanitize the house again.

When I called the nurse yesterday to check up on Blake, she told me he was just about out of breast milk. I told her Patrick would be in to drop some off when he got off work and to supplement him with formula if they needed to. Well, I guess Mr. Blake has a food preference already. She called me back a little later and said that he WOULD NOT drink the formula. She said he threw the biggest fit because he did not like the way the Elecare tasted. He's been on Elecare before but he got it through a tube and didn't have to taste it! So, apparently Blake is a breast milk kinda guy. Good thing I have a whole chest freezer stocked up for him.

I am so ready for him to finally be home. I knew we would hit some bumps along the way but here we are in the homestretch and we still don't have an idea as to when he can come home. I keep imagining the day that I can finally put him in our car and drive home for the first time. I look back at all he has been through it just seems like one big blur. I not only write this blog to update all of you guys, but I write it so that I can always look back and see what exactly happened and how far our little miracle has come. He has defied the odds over and over and it is amazing to see his progress and have record of it.

With everything that has happened since August, I must say how thankful I am to all of you who have reached out to us. I have met some of the most amazing people because of Blake. People who have been in similar situations and those who have not, have all come forward and offered us advice, comfort and love. When this all began, I looked into preemie parent groups on facebook. I was curious to see other mother's who have been going through the same things. Once you go through something like this, its like you want to be close to anyone who has a taste as to what you have gone through. I have become friends with a handful of preemie moms and it is so nice to follow each babies story and be there for the other parents to offer encouragement and support. One mother in particular has been beyond awesome. I was dead set on making sure Blake was able to have breast milk because I felt like that was the only thing that I could do for him while the doctors and nurses took care of him. But I needed help and she helped me. She went though all this just a year ago and has been able to provide so much information and support for me. She has been an amazing person to have around because she is truly a caring person. So Gwen, if you ever check and read this post, just know how thankful I am to have met you!


We are hopefully in the final NICU days. Fingers crossed that all goes well these next few days so that he can come home!!!

December 9th, 2012

I really should try to stay on top of this blog but I have no clue where this passed week has gone! So much has happened and all for the better. But where to begin?!

For starters, the last post I wrote was talking about how he got the meningitis from the Group B Strep bacteria. Well, After several days of thinking he got it from me his doctor kindly informed me that there was no possible way that he got it from me. The doc said that I was on plenty of antibiotics when I was in the hospital which would have taken care of that bacteria if I had it AND he would have gotten sick within the first week after birth. Doc explained to me that GBS is everywhere. Blake could have gotten it from someone touching a doorknob or a table, or even from someone with a slight cough or cold. As relieved as I was to know that it wasn't from me, it makes me all the more worried about him getting sick in the future. I've never been much of a germaphobe but you can bet that I will be now!

Blake is doing 1000x better than he was last week. He is completely off the oxygen and he is taking full feeds by bottle! It is absolutely amazing to see his precious little face without a single tube or tape on it! For nearly four months my poor baby has had some sort of tubing on his face. I must say it was a little strange seeing him without it all. It was like seeing a man who has always had a beard, shave it all off. It took an hour or two to get used to it but I absolutely love his adorable little cheeks! Seeing his naked face just reminds me of how far he as actually come since he was born. He is such a little trooper!

The infection is gone. They did another lumbar puncture to make sure that there were not any signs of infection left and his antibiotics will be done on the 14th! Little Blake seemed to have gotten better just as quickly as he had gotten sick. Thank goodness that it was taken care of as soon as it was.

There has been no word on when they can expect Blake to come home yet. But I don't see him being there much longer. The only things that need to happen before he goes home are for the antibiotics to be done, to get a head ultrasound which is scheduled for tomorrow, for him to pass the car seat test and to re-do his hearing test. The car seat test is where they let him sit in the seat for about 30 minutes to see if he desatts or has a drop in his heart rate. And the hearing test needs to be re done because the antibiotics that he was given in the beginning can effect hearing. I am hoping that he will be home shortly after his antibiotics are complete but we shall see! Blake has given us many surprises since he has been born so I can never be sure about anything!
 

After all this baby has been through, he deserves to SMILE!

Enjoying his bath.

Tube free face!

I absolutely adore him.

December 2nd, 2012

This week has been pretty much one big blur. It seems like once we start to catch a break, something else pops up and reminds us that we are not out of the woods yet. Blake's blood culture came back Thursday verifying that he was positive for Group B Strep (GBS). GBS is a bacteria that is naturally found in the digestive system and the birth canal. Pregnant women are tested in their third trimester for the bacteria but obviously I didn't make it that far into my pregnancy so I was never tested. The only thing they do if it shows up positive, is give you antibiotics during labor to protect your baby. Men and women have the immune system to protect themselves from this bacteria, however babies do not. And even though Blake didn't pass through the birth canal during birth, my water was ruptured for a week before labor which broke the protection seal that kept out any bacteria. 

When the doctor explained this all to me I couldn't help but feel like this infection Blake had was my fault. And seeing the guilt on my face as he told me, he explained that there wasn't anything that I did wrong. GBS is found in everyone and one month you can be positive and the next month it can be dormant and show that you are negative. It doesn't mean you are sick or unclean. It just means that you should take the proper precautions during labor. He also said that GBS is one of the easiest infections to take care of which was good to hear. But GBS is also a bacteria that can cause meningitis so the doctor informed me that he would have to do a lumbar puncture to collect some spinal fluid to check for it.

Everyone that I spoke to in the NICU was so optimistic that the infection hadn't spread into his spinal fluid because he seemed to be getting better so quickly. The antibiotics they put him on appeared to taking care of the infection. Blake was so much more alert and appeared to be so much more comfortable than he had been the few days before. Even with the ventilator down his throat, he looked at ease. When the doctor came in after the lumbar puncture had been done, he too seemed optimistic since the spinal fluid still was clear and wasn't foggy from infection. But not even two hours later, the nurse came in to inform me that he did have bacteria in his spinal fluid which confirms that he does have meningitis.

Like Blake hasn't been through enough already, he now has to fight off this infection as well. As disappointing as it was to receive this news, we were glad to find out that all he needs to get over the meningitis is a cycle of either 14 or 21 days of penicillin. The ampicillion and gentamicin that he was already receiving also can take care of the meningitis but those antibiotics take care of such a broad spectrum of infections, that they wanted to put him on the penicillin since it would be more directed as to what he needs. They did another blood culture to make sure that the bacteria found in his blood and spinal fluid are an exact match and once they can confirm that, then they will start up the cycle of penicillin. 

As of now, Blake is off the ventilator and back on the vapotherm. The settings are still on the high side (6.5 liters of pressure and only 23-25% oxygen which is good) but at least he is breathing on his own. He is getting fluids through an IV and they decided to start his feeds again but he is only getting about 15cc's every 3 hours to start and they will gradually increase it until he is back to where he was. I am hoping that I will be able to hold him soon. Its definitely hard not being able to hold him after I have been able to pick him up whenever I want just a few days ago.

As unfortunate as all this is, it is kind of a blessing in disguise. He has a late onset of the GBS which is rare. The doctor said that they see maybe one case like this a year (and little Blake just happens to be that 'one'). But the blessing in this is that he could have developed this either right after he was born or shortly after he would have been discharged. Blake went through a lot as it is when he was first born. He was so weak and fragile that I am thankful that he didn't have to endure this as well. And even worse, the meningitis could have appeared once we finally got him home and we may not have seen the signs of illness as quickly as the NICU staff did. If the meningitis was inevitably going to happen, then I am thankful that it did so when he is stronger and that he has the wonderful NICU nurses and doctors to look after him. Meningitis can be very serious if not taken care of right away. We caught it early. And that is a blessing.

The hardest thing for me as a parent is seeing your child go through all this. It doesn't get any easier. Your first instinct as a parent is to want to comfort your child when they are sick or in pain. Having him back in his plastic box, close enough to hold his hand but not be able to hold him in my arms and comfort him is hard. We were so close to having him home. I feel like how I did in the very beginning of all this. When he was first born, I tried so hard to stick with reality. I didn't want to feel optimistic or get too overjoyed with progress because I was so afraid of something horrible happening and getting heartbroken or disappointed. I took it as it came and that was easier for me. As soon as I started to feel like the worst was over, another road block popped up. I mean my poor child has gone through more than most adults in his 3 months of life. He's had the perforation in his bowel, several procedures and surgeries, getting pneumonia, and now the meningitis. At least I can cling to the fact that he is strong enough to keep fighting on. 

November 27th, 2012

Here we are again. Back in the NICU. I haven't updated this blog in a few days so I'll summarize it real quick.

Blake finally graduated into the CCN (the continuing care nursery) on Friday the 23rd. He was doing awesome. The CCN is where the babies go before they are finally discharged. Well, Blake was still on O2 but they were able to wean him quite a bit. And he was doing pretty well with his bottle feedings. He was just having some trouble trying to coordinate sucking, swallowing and breathing all at once. But he was doing it. He really was trying his hardest to figure it out. I started to get my hopes up that he would be able to come home soon.

Monday, Blake started looking a little pale and had no energy which caused him to not eat as well. He was desatting quite a bit and was needing more oxygen to help him out. His nurse thought maybe he just needed some red blood cells and that would give him the little boost that he needed. She told me she would talk to the Nurse practitioner to see what they thought they should do.

I came in this morning to find out that they hadn't given him a blood transfusion yet. His nurse told me that they dont like to give blood transfusions after 36 weeks gestation unless its absolutely necessary. At his age, (3 months actual and 39 weeks gestational) they want him to try and develop his own red blood cells. But today he just seemed worse. He was very pale and really lethargic. He was having trouble keeping his oxygen saturations up and his heart rate would occasionally get up to 200-205. I just knew something wasn't right. But his nurse said they weren't planning on doing a blood gas to see if he needed blood until tomorrow morning.

Patrick and I were at a family dinner for our nephew when I got a phone call from the hospital. The nurse practitioner informed me that Blake had been moved back into the NICU and was back on a ventilator. He was having trouble breathing and was extremely pale so they ran some tests. The blood gas came back with some acidosis which means he is fighting some sort of infection. We don't know what kind yet.

When Patrick and I walked into his room, Blake was as white as a ghost and just limp on the table as the nurses adjusted the ventilator and set up his IVs. I thought we were done with the scares but every fear that I have had in the last 3 and a half months all came rushing back when I saw him. He has come such a long way. We were inching our way towards the finish line but something just had to set us back.

As of now, he has had one lab result come back saying that it is more infection than the lack of blood causing his condition. However they still set him up for a blood transfusion to give him a little boost. He is on some antibiotics in the meantime to start fighting whatever infection he has. They also did an xray but didn't see anything too concerning. He has a fever but his nurse said thats a good thing because it will help burn off some of the infection. All we can do is wait for the blood culture results to come in but that could take a few days. And even then, we'll still be on the same course to recovery. The only difference knowing will make is how long he will need the antibiotics. If his blood culture comes back really bad, then they may do a spinal to see if it is meningitis. But that is worst case scenario. And even if it is that, at least it was caught early and is already being treated.

I am so ready for all this to be over. I want my son to be healthy and I want him to come home. Its been 104 days since Blake has been born and I have been so anxious thinking that our days here in the hospital were dwindling down. This is a huge set back. I cant even express in words how I feel. After everything Blake has been through in these last couple months he finally started to turn the corner. He kepting hitting milestone after milestone and I truly thought he could possibly be home by his due date on the 4th. I finally was able to feel optimistic and breath for the first time. And then this happens. My heart can't take much more of this. I'm back to square one. I'm back to praying for Blake to keep up his strength as he continues to fight and push on like the little trooper he is. 

I just want to cry but I know that won't accomplish anything . I wish I could trade places with him and take his pain away. No parent should ever have to go through this. I'm still trying to figure out how to cope with it all. The feeling of disappointment is overwhelming. He was in his final leg of this NICU roller coaster and here we are, back to not knowing how much time he has left before he can come home.

Please, please, please keep Blake in your thoughts and prayers. I'll keep you guys posted as I get more details.

November 20, 2012

14 more days until Blake's due date which gives us some sort of indicator as to when he may be home! Hopefully all the Thanksgiving hustle and bustle make the time fly by.

Blake was taken off the vapotherm yesterday. He has done amazing without it. He does have a low flow oxygen cannula but his nurse said that he really doesn't even need it. They just gave it to him so he didn't have to go cold turkey on oxygen. And now that the vapotherm is gone, he no longer needs the tube in his mouth that was venting air that was getting into his belly. The only tubes he has now are the oxygen cannula (which is less bulky) and the feeding tube that goes through his nose.

Blake was also able to breastfeed for the first time yesterday! We weren't sure how well he would do but he latched on like a pro. I think the tube being out of his mouth makes a huge difference. He didn't seem to have any problems with breastfeeding. In fact, he did better with breastfeeding than he has done with the bottle. Although when I tried to feed him today, he was so sleepy that he wouldn't wake up long enough to try again. But later when he finally woke up, he managed to eat 45ccs (a little over an ounce) of milk from a bottle! His only issue is trying to coordinate sucking, swallowing and breathing. He gets so excited to eat that he forgets to take a breath. Once he learns how to pace himself and gets up to full feeds by nipple, then we should be able to bring him home!

With Blake's discharge being so close, I have been nesting like crazy! I want to make sure everything is perfect for when he gets home. I want the transition to go as smoothly as possible. I can not wait to just have both my kids under one roof. I feel like once he is home, I can stress a little less. But only a little. I will still be a worry wart about him getting sick. I plan on making sure everything is clean and disinfected. I really want to limit outside germs as much as I can. The hospital recommends that Blake not go outside or go in any crowded places for the first few months. I might go a little stir crazy being on lock down with him 24/7 but I am so ready for it! After him being in the nicu for as long as he has been, I could definitely deal with being home with him for awhile. I am getting so anxious!!

His nurse has been talking about him graduating into the CCN, Continuing Care Nursery, the last few days so I'm hoping to go into his room tomorrow to find out whether or not that is in the plan. The CCN is where babies go right before they get discharged. Once he is in there, then we are definitely in the home stretch! Soon soon soon our baby will be home. =)

November 18, 2012

This week has been full of milestones! I've attempted to write an update several times but it has been a very busy week so hopefully I can finally finish a post and share all of our excitement. Blake is 3 months now and has officially hit the 5 pound milestone! He is about 5 pounds 1 ounce to be exact. His weight gain is always one of my favorite daily updates that I receive from his nurses. It's hard to believe that he started out 1 pound 8 ounces and now is a healthy 5 pounds!

Another wonderful milestone that he has reached is that he is now in a big boy bed! No more isolette for him. I walked into his room on Thursday and saw that his isolette was open and there was a crib next to it. I literally couldn't stop smiling once the nurse came in and confirmed that he was upgrading to an open crib. Blake is big enough to be able to control his own body temperature which is another check off his To-Do list before discharge. The nurses are so good to him. They attached a little musical mobile and other little crib toys to his bed to give him something to do during his awake periods. He would be considered a term baby now so he is more awake and aware than he used to be a few weeks ago.

Yesterday, the nurses tried giving him a bottle for the first time! They are starting with 5 cc's at a time and will slowly increase it as Blake allows them. Blake is on full and continuous feeds of the Elecare formula still but they used breast milk in his bottle. He will be on the formula until he shows signs that his body is digesting like the way it should. The Elecare is a lot easier on his belly since it is already pre digested. The neonatal specialist also said that I can start trying to breastfeed during his cares as well. The last thing I want to do is have him only feed from the bottle and me having to pump for an entire year. Not my cup of tea but I'll do what I need to. But hopefully Blake will be able to eventually to do both.So the plan as of now is to offer him the bottle every 4 hours. His nurse just called me a few minutes ago to inform me that he is doing really well with the nipple feeding which is wonderful. The sooner he learns to do full feeds by nipple (bottle or breast), the sooner he can come home.

Blake has also been able to wean on the vapotherm to 3 liters of pressure too! One nurse said that he may only have one more wean before they just take him off completely. I can NOT wait until he can get rid off all those tubes on his face! When I held him earlier, his numbers looked amazing so he is doing really well and hopefully they can wean him again soon. He truly is the definition of a miracle. The doctors and nurses have been talking about him almost being ready to go home and I am getting extremely excited!

I can see the light at the end of the tunnel now! I have a whole new pep in my step and I feel like the weight of the world has been lifted off of my shoulders. Blake is doing fabulously and I am crossing my fingers that he continues to progress. At the rate he is going, he should be home pretty soon!

Smiling in his sleep

Sleepy

Relaxing in his first tub bath from mama

Beautiful big bright eyes! He was so awake!

All tuckered out from his bath

The nurses gave him some entertaining crib toys

Kisses from mama

Cozy in his big boy bed <3

November 13, 2012

Today was a good day! Blake had his surgery 6 days ago and he has made some great strides forward since. Even though he has been getting all of his nutrition from an IV, he has managed to gain a little weight. He now weighs 4 pounds 14 ounces. So close to that 5 pound milestone! Blake was able to get off the ventilator on Friday and was placed back on the vapotherm (oxygen) which is great. I was really worried about him regressing after surgery and needing the support from the vent but he has done awesome. The surgery went smoothly and without any complications. The hard part about the whole ordeal has been seeing him in pain. I can only imagine how badly he must feel. His body is so little. Even though his incision is only about an inch wide, an inch compared to his tiny body is huge. They had him on morphine for awhile but once he was taken off the vent, they had to lower the dosage because he was too relaxed and wasn't wanting to breathe on his own. But he seems to be less agitated the last two days so I am hoping the pain is subsiding and he is feeling better.

After a week of not being fed, he was finally allowed to eat today. As I said above, he was getting all his nutrition from an IV because they needed to let his bowel heal after surgery. You could see how hungry was  the last few days so I am very glad he was able to get something in his belly. They started a continuous feed of 1cc an hour of the Elecare formula he has been on. The Elecare is pre digested which makes it easier to digest. Once he can tolerate full feeds they will put him back on breast milk.

He was also able to wean the pressure of the vapotherm today which is wonderful news. Blake went from 5 liters to 4. Once he gets to 3 they can start trying to get him to take feeds from a bottle. I am sooooo thankful that he has managed to do so well since his surgery last Wednesday.  I've been stressing myself out worrying about whether or not he was going to be set back on all his progress. But of course, my little Blake has proved to me again just how strong he is.

I would have been 37 weeks pregnant today which means there would only be about 21 days until his due date. That being said, the only obstacles in our way of getting him home are him sleeping in a open crib (which should be possible once he weans a bit more on the vapotherm), breathing on his own, and taking full feeds by mouth. I have my fingers crossed that he can accomplish these things soon! The finish line is in our sight and I am getting oh so anxious.

Sleepyhead

Recovery is the worst but he got through it!

First time holding Blake after his surgery

Smiling for mama =)

Love him!

Making faces.

Another Big Week for Blake Nov. 5th, 2012

82 days. Today marks day 82 for Blake and his stay in the NICU. He has certainly come a long way since day one. Blake will be 36 weeks gestation wise tomorrow. It is crazy to think that we have made it this far. When the doctors told me he would be in the hospital until around December, I couldn't even imagine it. It just seemed like so far away. But here we are, a month out from his due date and I'm starting to get pretty antsy!

This week is going to be a busy one for Mr. Blake. He gets eye exams every other week and his last one was just last Tuesday. Well, every previous eye exam has just shown that his eyes were still premature to see if there is anything to worry about. But last week the eye doctor saw some change and they are calling it 'stage 1' in his right eye which is why he is getting another eye exam tomorrow instead of next week. She just wants to keep checking on it to see if it gets worse or stays the same. Since he is pretty close to term and it just barely showed up, they don't think it will get much worse. And depending how bad it gets, they can perform laser eye surgery to correct it. But stage 1 is not bad, in fact it could self correct itself. Once you start getting to stage 3 and 4, then you are probably talking about options with your doctor. So as of now, its not a concern. We'll know more tomorrow after he is seen.

And Blake's BIG day is on Wednesday. If you've read any of my previous posts then you know about about Blake's tummy issues. He has had an ostomy bag on his belly for quite some time and that is where all his bowel movements go into. Well, he is finally getting his bowel reconnected and placed back inside his belly. The goal was to do the surgery when he got up to weighing 2000 grams. But they decided to go ahead and do it a little earlier because he has a hernia where the ostomy is. Not a big deal but they figured that they should just go ahead and to the surgery which will fix the hernia. As it turns out, Blake has reached his 2000 grams anyway which is great news. As of yesterday, he weighed 4 pounds 6 ounces.

The surgery is kind of freaking me out a little bit though. The thought of having him going under anesthesia again scares me. But what I am more worried about is the surgery as a whole setting him back on all the progress he has made already. The ostomy surgeries and issues plus the pneumonia really took a toll on him. Instead of progressing like he should have been doing, he was using all his energy to get better. He was able to slowly wean off the ventilators and get onto the vapotherm, but he still hasn't fully weaned the settings on the vapotherm. He has only been able to wean to 4 liters of pressure but went back up to 5 after he had his immunizations so that he could rest a bit. I am just praying that he can successfully wean off the ventilator and vapotherm quickly so he can start getting ready to come home. 

He has 29 days till his due date. Now, I know they aren't guaranteeing to have him home by then but I can hope. Blake still has quite  few obstacles to face before they can discharge him. The biggest thing he needs to learn to do is take full feeds by mouth. But he can't start practicing until he is weaned to 3 liters of pressure on the vapotherm. Feeding by mouth on a higher pressure would be like a "dog trying to drink while his head is sticking out of the window of a moving car." Blake's nurse gave us that fun little analogy but it makes sense. Once the pressure is lower, we can start trying to get him to feed by mouth. I've heard it can take some time for babies to conquer that feat so I'm hoping he can start as soon as possible!

I am extremely thankful for all the progress Blake has made already. God is good, that is for sure. I'm starting to think he may be home after his due date but that's okay. Of course I want him home, but I also want him healthy. This week is hopefully the last of the big hurdles. The end of this NICU roller coaster is in sight and as antsy as I am getting, I need to keep being patient. I keep telling myself that we have 29 more days but I do keep the reality in my mind and I know that it may be later than that. I don't care how long it takes as long as he continues to progress.

Please keep little Blake in your prayers this week while he undergoes his surgery and pray for a quick recovery. He's a strong little guy who has fought really hard to get to where he is at now. Hopefully these next few weeks get easier for him so he can finally come home!

He is 3lbs 15oz in this picture

Comparing him next to his monkey

This was taken yesterday. He was 4 pounds 6 ounces in this photo!