The official diagnosis

I realize it has been almost a year since I've posted anything, and I have every intention of going back and write down all the big things. but today, I must write this down for me to remember this when I feel weak. Yesterday, Liam was officially give the diagnosis of Hemiplegic cerebral palsy. Meaning, he has some paralysis and tone on the left side of his body. Took the news pretty well since I was kinda expecting it. Of course we didn't WANT to hear it. We wanted him to come out of all of this untouched. But we were also realistic and I was expecting it. I am SO grateful that he came out of all of this on the easy side of it. Being able to feed himself, breathe, hold himself up and is thriving wonderfully in everything. Jackie, his therapist says he is looking amazing. And I agree. He amazes me. daily. which brings me to this morning. While I was on the treadmill this morning I got lost in my thoughts. All the scenarios and challenges Liam might encounter through life. and then it hit me. Clear as day. Like Heavenly Father was waiting for me to finally have some thinking time and tell me this. "Liam's spirit decided to come down to earth and give up coming to a perfect body and come to a broken body instead to be a strength, and daily lesson to his family. To strengthen us and to keep us praying and holding onto Heavenly Father every single day." The PEACE this thought brought to me was amazing. It's so obvious. Ever since Liam came, our whole family has come SO far. We have always worked hard to be good members of the church. However, Liam's spirit has made us all SO much better. I have never felt closer to my Father in Heaven as I have lately. I have never felt the spirit so strong before. Liam has brought an amazing spirit into our home. And he decided on it before he even came. He is so happy. and he makes us all so happy. His siblings adore him. and they protect him. and I KNOW Liam will always keep them grounded and close together. I am SO SO SO thankful that Liam trusted us as his family. That he chose US to have his blessing. And his spirit. And that we get to enjoy him and his triumphs and also defeats. I'm so glad that his mission wasn't to just get a body. I know his spirit is strong enough to have done so. I'm glad he decided to stay and be a daily lesson to his siblings and his parents. All I want to do is be strong, supportive and a mom who can support him and his siblings and husband in all they do. He makes me want to be better. So I can measure up to what he needs. He gave up so much for us. For our strength. I owe it to him and the rest of my family to do everything in my power to help him succeed. In EVERYTHING. Love the gospel. And that I get to have the spirit to help me learn these life lessons and why they happen. We love you MR. Liam!!! I

New ground

Oh so much has happened since I was able to blog last... I've have NO time to. And when I DO have free time, I spend it with the other kiddies... Sorry folks. Liam has been rocking life. He amazes every one with everything he does. He has all the nurses wrapped around his cute chubby little finger. On April 15th Liam was transported to Primary's Nicu to have a reservoir put in. For you guys that don't know exactly what that is let me explain... a reservoir is kinda like a little button at the side of h is head. there is a little tube that goes into his ventricles and is connected to this little round dime sized circle that sits just under his skin. So it looks like he has a goose egg and a 1" incision.

every day they "tap" the reservoir. How they do this, is by poking his head with a small needle right in the reservoir and drain out spinal fluid that builds up in the reservoir. This should help clean out his ventricles and help things get draining. If his drainage system doesn't start doing its job, they'll have to put in a shunt. now a shunt is something that's permanent unlike the reservoir that comes out in a couple years. the Shunts starts out just like the reservoir in his head, but instead of having to go in daily with a needle, there's a tube that goes from his head, down his neck and chest, and into his belly. That's where the spinal fluid will go and drain into his blood system. Shunts are tricky though. they often have issues and need revisions within the first couple of years. So we were given the choice and we chose the reservoir first. Although only about 30% of kids that get these don't go on to need a shunt, we wanted to give him the chance to avoid the shunt. So we pray we are in that 30%. He's been doing great. and I mean GREAT. Very alert now, taking more feedings by mouth and finishing some. The pressure in his head however, makes him tired and sometimes he just doesn't have the energy to finish the feeds. So we will keep working on that. It looks like we may be up at primary's for a few more weeks. Which I dread. it's SUCH a long drive and the other kids are starting to feel mom being gone more... I HATE IT. I want to be with all my babies. We have been blessed with such amazing friends and family who have prayed, and helped us out SO MUCH. It has not been forgotten and we are still SO GRATEFUL for all the help and love we have been given. All the tender mercies that Heavenly Father shows us daily are a reassurance that he is still looking out for us and is happy with our knees hitting the floor so much. friends, He listens. He cares. and He loves us. Don't forget that. even in times of hardship where we are left wondering WHY?! He knows. So have faith that he will carry you through and keep him in your corner. He will help you finish the fight and make you stronger after it. The kids FINALLY got to hold and meet Liam. My mom heart was SO full to be able to have all my babies under one roof. The kids LOVED seeing him and being with him. Noah specially has had a special connection with Liam. Ever since I told him I was pregnant, he has always been very interested in him. asking me about him every day. When Noah came up to Liam's bedside last Sunday Liam's eyes were WIDE open and looking straight at Noah. He was moving around like crazy and his heart rate shot up. He KNEW exactly who Noah was. that special connection was so alive at that very moment. those two little spirits knew each other before this life. I am SO excited to watch them grow up together. Noah will be Liam's protector for life. Owen didn't know what to think of the whole situation but was still a great sport and held him and kissed him. Sophie was an adorable big sister and kissed him lots and told him how stinking cute he was.

This little chubs is almost 6lbs!!!

An Old Soul

Every day I wake up, make my husband his lunch, pump, get kids fed, changed and off to school, pump again, get ready to go to the hospital, arrive at the hospital and pump again, and then I reach my destination. Liam's bedside. I softly call out his name and he wakes up. He looks at me and every worry in the world is washed away. Not just two little eyes looking back at me. But two big windows to an amazing old soul. I've been told by nurses who have him for the first time, that they look at him and see SO much depth. they see an old soul. He knows what he's doing, and how to get the job done. He knows exactly why he's here, and his mission. All the worries about him go away as soon as he looks at me with those big eyes and I just feel joy. to the be mom of this amazing little spirit. How did we get so lucky to have him? My testimony and faith in God is strengthened every single day because of him. He is blowing everyone at the NICU away with his improvements. Liam is weighing in at just over 4lbs. (he was born at 2lbs 11 oz) he has started to latch on and drink small amounts of milk from me. which is GREAT since he's not supposed to know how to suck, swallow and breathe yet. OH what a joy it is to see him do this at 33 weeks when they don't usually start trying until 34ish. He is a CHAMP at it. His head size is staying stable so he gets to stay down in provo unless things change. but we only see them changing for the better. He was put back on a cannula yesterday because he is focusing all of his energy on learning to eat and wearing himself out. They tell me it's totally common and normal. as he grows he'll get the strength to keep his numbers up and be off of it. No biggie they say. He was moved to a crib!! no more incubator for him. It's getting hard to leave him every day. when He sits there and stares at you and holds your hand. just a few more weeks. just a little longer... Last week they came and took a few pictures of Liam and I to put on the new Utah milk bank website and brochures. Word got out that I'm a milk cow (really I am.... 70oz a day worth...) and that Liam was cute as a button and they came and paid us a visit. excited to see where they put us :)

A little update about a little guy

Oh Liam... you have been keeping us on our toes SO much lately. Every day we have Liam's head circumference measured to make sure that the blocked ventricle isn't growing too fast and is smashing his brain. He is supposed to grow 1cm a week. He has big growth days. like 3/4cm days like yesterday. and 1/4cm days like the day before. and then there's no growth days like today. We like those. Because it keeps his growth in check. He has a big head. that's for sure. But all our kids have had them. 99%tile heads. all 3. So we wait. and keep an eye on his growth and make sure it stays on the right growth curve. if it grows too fast, he'll be headed to Primary's for closer observation. if it grows too fast after that, he'll be getting a shunt put in. we are praying this is not the case. The doctor we looked at his head ultrasound pictures with, said that his ventricle is most likely clogged from all the tissue left over that he has from his brain injury. So hopefully it'll just drain itself out. SOON. Liam got switched his his very last cannula! and is getting lower and lower O2 levels. down to almost 1L. He weighs 3.25 lbs!! This weekend or early next week, the occupational therapist is going to start working with him and his oral work. Getting him ready for bottle and nursing. He also graduated to nursery B! GO Liam!! Nursery A (which he was at) is the new baby nursery. The critical babies are in A. B is for more stable babies and C is for almost ready to go home babies. We are very excited about his move. Although, that nursery is a LOT quieter than A. And it makes me uncomfortable. LOL. not used to silence and quiet. But I sure DO enjoy it. I hold Liam daily and every time I do, he is WIDE awake. Almost the whole time. He is a super alert little guy. We are so proud of our little Angel boy and all the progress he is making. Your prayers are working miracles and Heavenly Father is listening!!! Please keep them coming!!! I can't believe the improvement we see in this little guy in his first 5 weeks of life... from this...

To this...

God is good my friends... God is good.

One month down, Eternity to go

A couple summers back I was helping a friend get in shape. She wanted to be able to run a 5k and I decided I'd help her achieve that. While we ran she felt defeated and like she couldn't go any further. No way she'd say. so I'd tell her "let's just go to that mail box and then we'll walk for a few" when we'd reach that mailbox I'd say let's just push it and make it to the next one. And you know what? she would make it. Although she was certain she wouldn't make it to the first one, she did. And not only that, but she made it to the second one. Our minds, our bodies and our spirits are capable of doing SO much more than what we give them credit for. We think we can't make it. But if we try, we not only make it, but go further. Friends ask me how we are making it with Derek working 2 jobs, building our house, driving to park city and back every day, 3 small children and a NICU baby. Just when we think we just cannot handle ANY more in our lives, we are proven wrong. We are SO capable of handling a LOT. How? with the help of our Heavenly Father and family and friends. We thought we had our plate full before... but now we know we can handle everything that is thrown to us. A dear friend of mine wrote me a letter to help me through this difficult time. She's gone through the NICU experience and knows first hand how it feels. In fact, she's gone through a LOT more. Gosh I look up to her. She told me to believe people when they tell me that Heavenly Father doesn't give us anything we can't handle. Oh how I believe that. We can handle it because HE is ALWAYS there for us. through everything. THAT'S how we can handle ANYTHING. I can't help but look back to this last month of our lives with so much reverence. So much thankfulness. An experience we will never EVER forget. We have learned so much from Liam, our Heavenly Father and people around us. I will hold this experience so dear to my heart. Liam is doing GREAT. His brain is apparently draining properly now because it's growing normally. The latest ultra sound shows the damage they though he'd had isn't as bad as they thought. He still shows some, but not as severe as previously thought. If you didn't believe in the power of prayer before him, you should now. Because the is living proof of it. His lungs are doing great too. he is up to a high flow cannula. He started on level 5 oxygen (highest) and was upgraded to a 4 but had too many swings of oxygen levels so they dropped him back up to a 5 for now. give him a little more time. He is eating my milk and NOTHING else. he is off iv feedings. He throws up here and there but is handling my milk very well. He is now 3.1 lbs! 1400 grams. what a good boy he is. he LOVES being swaddled. and has a lot of nurses wrapped around his tiny little fingers. He has touched the hearts of a lot of the staff. Everyone feels attached to him and everyone is very surprised at his recovery and improvements he does. I'm not. prayers my friends... prayers. He loves to be held by his momma. His numbers always look great when he's with mommy. And he always poops. yay me! Today he had an eye test and totally aced it. No signs of anything weird. keep the prayers coming my friends. He is living proof that He listens. He knows. and He CARES.

Eternally Grateful.

Eternally grateful. That's how I will feel for the rest of my life. I will look back at this really challenging time in our lives and feel so much thankfulness for the blessings that have poured onto us lately. I feel so completely overwhelmed by people's kindness lately. It brings tears to my eyes to think of the things family, friends and strangers have done for us. I wish I could express how thankful I am for all of it. and explain how much it means to us to have all the support and prayers we've been getting. Liam's progress shows it. He has so much love going his way that it's carrying him through this too. Never through all of this have I felt alone, or unloved or angry at the circumstances. We have felt so much comfort from the spirit. So much peace. We have NO idea what the future holds for Liam, but whatever it is, we are by his side. every single step of the way. with whatever he needs. And we can do this because God will be right next to him too. he'll carry him by one arm, and us the other. He can do this. Whatever the end holds. The biggest challenge of all of this is trying to juggle life, and life at the NICU. Trying to keep the other 3 kids happy. involved. and be present for them as much as possible. Derek visits Liam before work. I go at 10 to make it for his 11am care rounds. I leave the NICU at 2 to make it home for my kids after school and Derek and I go back together after the kids go down for the night till about 930pm. We try to sneak in visits as much as we can without being absent for the other kids and disrupting their lives. it's so hard. I'm exhausted. all the time. but we can do this. My mom and I took the kids to the mall on saturday to have them pick out a blanket to put on Liam's "bed". of course they picked fire trucks. Liam is making great progress. up to 2ml feedings of my milk every 3 hrs. His tummy finally seems to be handling it. and we can not be more grateful for it. This is big for his nutrition. so we pray he continues to handle it well. His respiratory is doing great. he is getting his settings lower and lower. the new concern that has come up is the swelling of one of his ventricles in his brain. it is enlarged due to poor draining of the spinal fluid. if it continues to grow, he will be moved up to primary's to get a shunt put into his brain that will help drain the fluid. We are HOPING and PRAYING that this will resolve itself and not grow any further so we can avoid that. The damage on his left side of the brain seems to be less severe than what they thought it'd be. The right side of the brain still shows "significant" damage. although they still tell us they won't know how it'll affect him. Or how his brain will rewire itself to regain that lost part. Angels are protecting him. And helping him. I know it. I can feel it when I'm by his bedside. The spirit is SO strong around him. I am SO incredibly honored to have this special little guy in my family. He makes me want to be a better person, and mother to him and his siblings at home. We can do this. whatever comes our way. Because we have amazing family and friends who will help us carry on. I have an amazing husband. Who makes me feel so secure and loved. As soon as I'm with him with his arms around me, all uncertainty goes away. Because with him by my side I know I can carry on with whatever it is that's coming our way.

BIG victories

Not only does Liam touch many people's hearts every day, but he also makes big improvements everyday. Some days less than other but yesterday was a big day. Liam was finally able to be taken off his intubation tube. If you ever want to watch a suspenful moment, watch your baby be switched from being intubated to being on a nasal cannula. He wiggled, a lot. it made me SO nervous. but the respiratory therapist was right next to me reassuring me everything was under control and that Liam could breathe just fine. He was just getting used to breathing instead of letting the machine do it for him. Throughout the night, he's been lowered on his oxygen levels and is back to the levels he was on the ventilator. He is doing GREAT on it. that makes this momma SO happy. His throat was a little inflamed from being intubated for 2 weeks so they gave him steroids to help that. But those raise his blood pressure, so he's on medicine for that too now. what a balance. it's an ART to keep this babies stable and happy. The doctor that gave me his update today said "today is probably his best day of life yet." he is doing GREAT. His extremity movements are symetrical and good. He seems comfortable and very strong. His tummy seems soft and has a good color today so they are going to try my milk again today. we'll see how he does with it this time. They have tried twice now to do a spinal tap on him to rule out infection, but have been unsuccesfull getting a good sample. it breaks my heart. But they say he handles them good and stays stable. He's off the billiruben lights now so he can be swaddled! it makes me look like a little snack size burrito. But he LOVES it. he is making leaps and bounds of progress. I finally got to hold him against my skin. He melted onto me. and my heart melted. he was completely content. and so was my heart. it was the closest he's felt to me since he was safe inside me. I sang to him for the two hours that they let me hold him. And I couldn't stop smiling. it was perfect. He will have to have an MRI when he is 6 months old so we know exactly the damage that was done to his brain. So we wait. and wait. Two weeks ago our life was crazy busy. With Derek building our house, two jobs, the kids' schedule, and just life in general. We had a full plate. And now, we have Liam. And his trials. However, I have never felt so secure, and happy and as close to my Heavenly Father as I do now. When life gets completely out of control and we feel like we have a plate that is overflowing on all sides we can turn to our Heavenly Father. He listens. He knows. And he cares for us. He won't let us fall. and if we do, He'll help us get up again and again. Sure there are days that I feel completely overwhelmed with life and our future. But the last few days, I've had a huge sense of peace. So much so that the sad tears are almost put away. Now I have tears of joy. Tears of the Holy Ghost telling me that everything will be fine. no matter what. Tears of the spirit reassuring me that he is there. to comfort me. to be strong for Liam, and my other kids. To make them all feel loved. The best I can. and when I feel like I just can't be there enough for either Liam of my other kids, he reasures me that I'm trying my best. And that Heavenly Father understands. My heart is so completely full of gratitude. for our family, friends, neighbors and complete strangers who have given SO much time and effort into helping us out with our kids, house, house work, food, laundry, and being there for us. I will never be able to express to anyone the complete humble heart I have torwards everyone helping us. I just want to pay it back to everyone. and I will.