Saturday, December 29, 2012

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


Wednesday, December 26, 2012

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


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!

Friday, December 14, 2012

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!!!

Sunday, December 9, 2012

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.

Sunday, December 2, 2012

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.