Holidays

We have successfully made it through the holiday season with 3 little men! It was so wonderful to have Mr. Gavyn part of our family this year.

Thanksgiving was a wonderful week of celebration. Gavyn was dedicated at our church the weekend before the holiday and it was truly a special day. We were surrounded by family and friends who love us and our little man. People who supported us, encouraged us and cried with us this past year. My favorite part of the day was when we all prayed over him, although he was napping in the other room. :) To hear the love and care that he is surrounded with was truly special.

Christmas was super fun with three little boys. Gavyn was totally in to getting paper off of boxes and pulling paper out of bags. He was having more fun with it than I remember either of the other two boys at his age! Of course the paper is always more fun at his age than anything else. We did get him little baby drums that play music and he loves it, super fun for "baby bang, bang."

It was a magical time of year for our family with many blessings and surprises. We are looking forward to this new year with great hope for our little man. He is doing new things every day and slowly making progress. We are confident that he will get there in time with support and love.

Sleep Overs

Tonight is Gavyn's second, yes SECOND! sleep over at Grandma's house. On the third of this month my wonderful husband surprised me with Symphony tickets at Powell Hall for my birthday. Instead of staying out our house until we got home my parents were brave enough to take all three kiddos to their house for the night. I was also brave enough to let them take my baby and keep him out of my sight for more than a few hours. The symphony was wonderful, the best date night we have ever had, I thought. But I was quick to give my parents a call when we were leaving to see how Gav was doing, he was sound asleep and being a perfect angel. When I got to their house, bright and early in the morning to pick him up I was expecting to find a pouting face little boy ready for his momma. Instead I walked into a pouting faced 4-year-old not ready to leave, a happy and excited 2-year-old and Mr. Gavyn falling asleep with PaPa for his morning nap. I know he missed me but he did not show it! :) Tonight my brother Shane and his girlfriend wanted to come and make gingerbread houses with Sky and Nev, put them to bed and let us go out for dinner as an early Christmas present. They hadn't watched the boys at night before with the extra tasks of dinner, bed and excitement so mom agreed to watch Gavyn for them. We knew he would fall asleep at her house though and there was no way to bring him home unless he woke up or we chanced him just being up for hours after being woken up. Which meant another sleep over at grandma's for little man! I cannot believe that he is doing so super amazing that I feel comfortable enough to leave him period, much less at my mom's twice in 10 days over night. Such a miracle boy.

Progress

Today was Gavyn's 9 month check up! While we were in the hall at the office getting Gav weighed his doctor walked by and just smiled at him, "Look how big Gavyn is! My how time flies..." You are telling me doc. Something about 9 months gets me sentimental and in awe that my baby is almost not a baby anymore. Only 3 short months before the 1st Birthday and a whole new world opening up to my boy. Doc was happy with his weight/height:

Weight: 18 pounds 10 ounces
Height: 26 1/2 inches

He was excited to see how well he is sitting up (man have we been working hard at that!). We talked about the non-rolling issue but he was so pleased with his sitting that it did not seem to bother him as much. Like he said, it could be because of his medical issues or it could just be his personality. With continued PT and OT I think we will get there shortly though. We all know he is capable of it, he has done it 2 times before it is just getting him to do it on a regular basis.

Gavyn loves his food (obviously by his weight!) and is eating a wide variety of fruits, veggies, grains and dairy products. It is fun to watch him explore new foods and learning how to self feed. If you hand him food in a pincer grip he does good at getting it from your hand to his using his pincer grip. If it is on the tray he is mostly still raking it to get it into his mouth.

He is all Gavyn and yet I see so many things that remind me of his brothers in him. His contentment with sitting and observing reminds of me Nevin. His fast/excited/hurried hand and arm movements remind me of Skyler. His babbling and singing remind me of Skyler and his sleeping habits remind me of Nevin. All things combined make up his own unique, sweet personality. I can't imagine life without my little Gav.

Dear Gavyn,

Some days I want to put you in a bubble where nothing can hurt you and everything will turn out fine. Other days I feel strong and am ready to push you and see what your therapists will think of next. On bad days I want to hold you and cry and try to stop my mind from thinking of all the worst case scenarios that could happen. And on good days, I just love you for the amazing and wonderful joy you are to our family. A life of never knowing you would have never been complete. A life with you taken from me would be unbearable. The day to day of right now with small victories, some set backs, and endless smiles from you is a treasure in my heart. I love you so much big boy. I know we will get over these rough times and you will be a strong man with so much to offer. It is hard for mommy to watch so many kids surpass you (and Nevin) but I know that you will both make up for it. You will have mighty characters, strong and good hearts and a caring gentle spirit even if you never walk or talk. Both of you are my precious little men. There will always be a place for you in this world and you will always be needed and loved by someone.

Kisses and hugs,
Mom

p.s.
Go kick all their butts
;-)

Mr. Gavyn

Today was Gavyn's second neurology follow up at Cardinal Glennon. That and neuro-surgery are always nerve racking because you just don't know what they will say. You hope for the best but they could always see something you are missing, right? Thankfully, Tracy the nurse practitioner thought Mr. Gavyn was doing well. She was not terribly worried about his lack of rolling since he is seeing an OT and soon a PT. She really felt with the extra eyes on him and people working with him on a weekly basis he would be getting the hang of it soon enough. I did share that he had rolled twice on Saturday but not since then. At least not that we have seen... It was comforting to hear that she believes he will catch right back up. Give him some time since he laid in a hospital bed for 21 days and was unable to move. He lost a lot of time for a little man. She was extremely happy to see him sitting up and doing it so well! He doesn't have to go back until he is 1 unless there is a major change for the worse. Of course no one is expecting that! It seems that Mr.Gavyn is starting to get a more normal routine for Doctors... back to wellness check ups and much longer periods in between Glennon trips. Slowly, slowly the turtle wins the race.

3rd Baby Charm

Yesterday we went to get our haircut. Like any good Mom taking 3 boys for haircuts I packed Skyler's back pack with books, coloring books and markers. But like a busy Mom I placed the babies carseat in a spot that I could only see if I turned around and looked, not from the mirror while I got my hair cut. I was a proud Mom that I had a quiet, cooing baby, a well behaved 2-year-old and a 4-year-old who kept checking in while I was getting pampered. About 5 minutes before I was done Skyler said something about the baby and a marker. I told him not to let Gavyn have the markers because he would put them in his mouth. He responded that Gavyn wasn't holding
marker, he had marker on him, only 1 little spot
though! I told him he better not color the baby anymore and he stayed by me until I got up. I turned around, picked up Nevin, then I saw him, Mr. Gavyn was colored head to toe! He had green on his cheeks and forehead, orange on his arms, yellow on his legs... He looked like a man ready for battle! I gave Skyler a stern warning to not color the baby again. (Although Nevin often colors himself and I feel it is a form of expression for them. But lets let Gavyn color himself when he is ready.) The girls in the shop said he was just smiling and laughing the whole time! They thought I totally knew and was OK with it. I am
OK with it, just did not know. Such a 3rd Baby, goes with the flow.

Midnights

Dr.Werner was right...

I wrote sometime ago about the first 3 people in the PICU that made an impression on me and one of them was Dr.Werner. He was the attending the night Gavyn was admitted and also the one who showed us the images from the CT scan. Just thinking about that dark corner of the PICU where the computers are for looking at images, gives me a chill. So many conflicting and confusing emotions were going on during that time. It is still such a vivid memory that I can feel it, taste it, hear it...
Dr.Werner saying the scan was not normal...
Grabbing my throat...
Rubbing my chest...
Ryan putting his hand on my back...
Saying, "You are breaking out..."
"It happens,"Dr.Werner....
Mind swirling...

The only question I could think to ask was if it was brain damage. Hearing it was. Him saying to tell people to wait to ask if Gav could do things a year from then. Meaning we were not going to be sure. Anything and everything was possible, for good and bad. And then he said it, looked me dead in the eye and said, "This is not your fault. When you are lying awake at 2 in the morning starring at the stars, tell yourself that this was not your fault."

Lately I am back to not being able to sleep. I feel so extremely tired by the end of the day, crawl into bed, close my eyes, feel the warmth and comfort. After about 2 minutes I start to think of the day he was born, how that is when I passed the infection to him. The day he had the seizure, all the little signs I missed up until that event. Hearing Dr.Warner say those words, hearing every other doctor after him talking about brain damage. The day he went back in for his shunt. Every ER visit in between and after. What he is having delays with. And it all goes back to the day he was born. The day I infected him with something I had never heard of, Group B Strep. It makes me wonder, was he born with hydrocephalus, did the group b give it to him because of the meningitis? If he was born with it what did I do when I was pregnant that caused lack of air to him or something else? The more I contemplate the less I can sleep.

I remember Dr.Werner's words and try to make myself believe that. I remember Dr.Garret telling me that Group B is on many things and they don't know enough about it. Trying to comfort me. But don't you just sort of know where blame should fall? I always knew I would make mistakes at being a mom, what mother doesn't? But I would have never thought I would have risked my child's life and health. Maybe one day I will figure out what happened. Dr.Werner was right, I do lay awake at night and stare at the stars. I can't make myself believe that he was right in telling me I did not cause the damage to my child though. He was in my belly for safe keeping and I did something wrong. I was in charge of him and made a bad choice at some point.

Remembering

I have not posted in a long time because it is getting harder to write about Gavyn. He is doing so well, it is amazing to watch him every day and remember what a miracle he is. I still think of Cardinal Glennon on a daily basis though. I wonder when that will pass. Some days I think about it more than others, some days I only think about it because of the picture we have in the family room of him in his hospital bed. I still have nights that I can barely fall asleep because of the images in my head. The morning he had his seizure, the day he got brought back to the PICU, the day he got his shunt in... some memories are of course more vivid than others.

The last four days it has been on my mind a lot. Friday morning Nevin Lucas fell down 1 step outside and got a hair line fracture in his leg. Our pediatrician sent us to Glennon to have it checked out, she was sure it was broken but they don't do x-rays. Mr.Nev and I spent 9 hours in the ER. We visited with a few familiar nurses, watched some cartoons, played with trucks, got about 6-8 x-rays done and, we walked all around the ER.

I started to carry him around and our nurse told us if the doc came she would come get us. I never realized how small the ER was. When we rounded the corner and saw the doors for the ambulance entrance I just stopped in our tracks. It seriously caught me off guard. For a minute I actually thought I was going to be sick. To be standing in that place, with my son, looking my worst nightmare in the face again, unprepared was almost too much. I got my composure and gave Nevin a little squeeze. Then I told him that when Baby Gavyn was sick that was where he was brought in, we walked past the room he was in, it was occupied by a little girl this time, Nevin blew her a kiss.

We went back to his room for a little break, I washed my hands. When I sat down I put my hands up by my chin, resting my elbows on my knees. There is was... the smell of the PICU, of Glennon, it was the soap. When Gavyn came home from the hospital my clothes smelled like the PICU for a couple weeks. Even after washing them. Sitting in the ER with Nevin I realized it was the hand soap. It still does not make sense to me but it brought back a flood of memories.

On our second walk around the ER we passed a family moving from the ER up to the floor, perhaps the PICU. A Dad, pulling a cart with the babies seat and diaper bag, Mom was holding tiny Baby Girl, following the nurse. She looked lost, scared, alone, Dad looked helpless. I knew the look well, I had it on my face for weeks as well. I said a prayer for them, Nevin blew a kiss.

Of course Nevin left the ER that night with a cast on his leg, we came home to two other healthy boys and I knew life was OK. But tonight as I was starting to pack things for our vacation I opened up my bathroom travel bag. There were a few things in it, at first I was thinking it was from last years vacation. Then I realized as I stared at it that it was everything I used while Gavyn was in the hospital, far from a vacation. But my life is blessed because here we are, here he is and we are going on vacation.

Everyone's life has a purpose, you might be surprised what yours is.

This Road

All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth

Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own

This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through

Life & Death

When Gavyn was in the hospital we did not have a lot of visitors and most who did come were repeat visitors. Some of the family was unable to come because of him being in the ICU and the restrictions there are. I think friends were not sure if they should come or not. There was communication through Facebook and texting since I could not take calls while in his room and I did not want to leave most of the time. Even though I was surrounded by people in the PICU and had family ready to drop anything and come up, it was one of the loneliest times in my life.

Half of the time he was in the hospital I was staying with him full time. Usually my dad would come up in the morning and see us for a little while then leave mid-morning. Ryan would come up by 6pm to have dinner with me and stay until I would go to sleep around 10-11. During the middle of Gav's stay I was staying at my mom's house. I would wake up around 7, get myself and the boys ready, leave to go around 9, not see anyone sometimes until Ryan would come. If it was a bad day my dad would stay or mom but Ryan had to keep working. There are no vacation days, sick days or leave of absence when you work for yourself. I still do not know how he made it through. Two of our Pastors came by, my parents pastor, who I am close to (he married Ryan and I) came by frequently. A couple girl friends stopped by, brothers... It was lonely though. It was a time to suffer alone and grow.

There is one visit and visitor that I remember very vividly. It was unexpected in many ways. It was Ryan's cousin Chris. He was the only extended family member who was able to come. I was sitting in the rocker next to Gav's bed, I was journaling if I remember right. I heard a familiar voice behind me and when I looked over it almost took me a second to realize that it was Chris. It caught me off guard and when it registered with me I was just so glad to see him. I gave him a big hug. I could tell immediately how hard it was for him to see Gavyn. None of Ryan's family had even gotten to meet Gavyn before going into the hospital.

Chris is Ryan's cousin, he was the cousin Ryan had talked about when we were dating before I meet anyone. He was married to Mandi and when I joined the family their son Isaac was 6 months, he will be 7 in a few months. The first time I met the family was on Easter and Chris and Mandi were the 2 who really made me feel welcome. Chris is one of those guys that just wants to make everyone laugh and he loves to tease people. He made me feel like his little sister because his teasing is so much like my brothers. Mandi was easy to talk to, had a great smile and laugh and just wants you to feel comfortable. It was their ease in welcoming me that made me really feel part of the family.

We talked about Gavyn and what had happened. What all he was hooked up to. The plan of getting him better and what could be expected. Chris was emotional and it was hard for him to keep it together. It is hard enough to see the kids in the PICU, it is harder still to be attached to one of them and see it and I can not imagine how it felt for Chris to meet his 2nd cousin for the first time under these circumstances. He told me that it was killing Mandi to not be able to come see him. There was a reason though, she was just now 6 weeks pregnant! It was the worst setting to hear some of the best news for our family. They had been trying for years to have baby #2 and had been through many trials along the way. I was so excited! It could not happen at a better time it seemed. To be reminded that there was life outside the 4 walls we were prisoned in now. Even then I knew, they would be blessed with a healthy pregnancy and that Mandi would be the one to carry the baby girl the family had been anxiously awaiting for so many years. Baby Addy will arrive in November and we could not be happier.

There will be 3 new babies for Thanksgiving and Christmas this year. Three wonderful babies that are precious gifts all in their own way. A much awaited Baby Girl for Chris and Mandi. The first baby for Andrew and Patty. And mostly for me, Baby Gavyn, the one who almost did not make it.

Dress Up

My boys love to play dress up. Nevin has always been a hat kid. He will go into his room, rummage around in the closet and come out with a fireman hat on, train hat, chef hat and just smile at you. He will get my shoes out and put them on as well and walk all around the house, very carefully so that they don't come off! Lately Skyler has taken to the concept of dress up as well. The other day I had brought up some materials and tools for a project and left them in the kitchen. When he asked about it I told him I could not start it right now but in a little while. 10 minutes later he came out of his room with his play tools stuck in has pants (like a tool belt), hat on and play wood.

"I am going to fix it!"

Off to the kitchen he went.

Yesterday I suppose it occurred to them that Gavyn should be dressing up as well. Skyler got the train hat out and plopped it on his head.

"Look! Train Gav!"

Simple moments like these make my heart smile. To have creative fun loving kids and to have all 3 of them home, healthy, growing and loving each other. God is good.

Ice Cream

Lately I have been really craving ice cream and every time I eat some I think of our Pastor Joel and the PICU.

The third day we were at the PICU Ryan got a call from Joel, his wife Melissa had noticed one of our posts about Gavyn and being in the hospital. He wanted to come see us, pray with us and talk. Later that day he came up right after the docs had finished rounds and we were waiting to see the Neurologists for the first time. We told him the story of why we brought him in, the craziness surrounding him being admitted, and how his CT scan was not normal and we were waiting to see what the Neurologists thought about it. He asked a lot of questions and wanted to know everything that he was hooked up to. He prayed for us, he prayed for Gavyn and he read this passage. Before he started he told me, "There is a part in here that is scary but I think it is still encouraging,"

¹⁷"For behold, I create new heavens
and a new earth,
and the former things shall not be remembered
or come into mind.
¹⁸But be glad and rejoice forever
in that which I create;
for behold, I create Jerusalem to be a joy,
and her people to be a gladness.
¹⁹ I will rejoice in Jerusalem
and be glad in my people;
no more shall be heard in it the sound of weeping
and the cry of distress.
²⁰No more shall there be in it
an infant who lives but a few days,
or an old man who does not fill out his days,
for the young man shall die a hundred years old,
and the sinner a hundred years old shall be accursed.
²¹ They shall build houses and inhabit them;
they shall plant vineyards and eat their fruit.
²² They shall not build and another inhabit;
they shall not plant and another eat;
for like the days of a tree shall the days of my people be,
and my chosen shall long enjoy the work of their hands.
²³ They shall not labor in vain
or bear children for calamity,
for they shall be the offspring of the blessed of the LORD,
and their descendants with them.
²⁴ Before they call I will answer;
while they are yet speaking I will hear.
²⁵ The wolf and the lamb shall graze together;
the lion shall eat straw like the ox,
and dust shall be the serpent’s food.
They shall not hurt or destroy
in all my holy mountain,"

says the LORD.
~ Isaiah 65:17-25

He was right, it was scary to hear some of those words but it was also comforting.

We chatted some more, I asked if they had found out if they were having another boy or maybe a girl. They too were having their 3rd. boy and he told me I needed to encourage Melissa. Right before he left he just looked at me and said, "You really need some ice cream, what is your favorite kind?" At first I just laughed, I thought he was joking but he was totally serious. He left for about 30 minutes and arrived back with a whole container of chocolate brownie Ben & Jerry's ice cream just as the Neurologists were coming in for the first time.

I didn't get to say thank you to him because we were talking with the docs and that day was one of the most hopefully. The docs had good encouragement for us. After they left we grabbed that ice cream, went out in the hall, sat on a bench in the sun and ate the whole container. It was a decent day for the PICU.

Just some Thoughts

This week was the end of an era around here I guess. When Gavyn was in the hospital I was pumping milk for him but slowly drying up with all of the stress. I kept at it the entire time he was there though. I even nursed him a few times but the more bottles he got during his stay the less and less he wanted to nurse. When I talked to the lactation consultant before bringing him home she was going over everything I needed to do to get my supply up. I just broke down crying because I knew going home to normal life and trying to take care of 2 big boys and a baby with extra needs it was not going to happen. How could I sit on the couch for over an hour pumping, nursing, giving bottles and ignore my two boys I had not seen for 3 weeks? I decided to go home and pump as much as I possibly could but not force the nursing. Gavyn was happy with the bottle and I was OK giving it to him. I continued to pump until he was 6 weeks. It was right around the time he went back in for his shunt that I quit. The pressure was too much and I need get ride of as much stress as I could. I did however put 3 small bottles in the freezer and decided I would hold on to them just in case. Gavyn has been just on formula for about the last 2 months I would say and this week he got his first cold. I will admit part of me felt the guilt creep in, maybe if he was a breastfed baby he wouldn't have gotten sick yet. My other two boys never got colds until they were a year. Thursday I pulled those little bottles out and gave him the last of the liquid gold. I knew it would be easier on his tummy and maybe give him a little boost. I guess it helped because he is much better today.

First Cold

I hate this... Gav has a cold for the first time and it really sucks. I told Ryan that it is hard enough to handle these things being a mom but on top of the normal worry it makes me go crazy wondering if something is wrong with his shunt. All the symptoms of a growth spurt, cold, any sickness is the same as something being wrong with his shunt. How is a mom supposed to deal with that? Every time he coughs I feel so bad for him! It sounds horrible and he is so tired and pathetic. I took him to the Doc this morning and thankfully nothing is settling in his chest or ears. Also sucks because no meds to help him get better. Just Tylenol when he is super fussy. It has been a long day and my mind feels like mush from all the worry.

4 Month Check Up

Yesterday was Gavyn's 4 month wellness check up. I was a little nervous heading over because I knew more shots were due and also anxious to hear if he was on track or lagging behind in any areas.

On a side note, when you go to the doctors office and are waiting in the waiting room, if you see a cute baby, how about you ask the mom if you can put your sticky fingers on them before you just start touching. I had a mom get all up in his grill and let her little 2 year old daughter do the same. He was in his car seat so it was not the easiest thing for me to just sort of move away and I did not want to make a big scene. But really, do people think babies are just free game for anyone? He is a little person you know!

Anyway... he weighs a whopping 13 pounds 7 1/2 ounces and 23 inches long! I know to some people it may not sound that big but if you would have or had seen him when he left the hospital after 19 days he was so skinny! He was my biggest baby at birth, 8 pounds 9 ounces. When he left the hospital he was right around 7 pounds and 5 weeks old. His skin had been so stretched out because he had put on about 2 pounds of fluid the first 2 weeks of his stay from the IV's. Once he was off and started peeing everything off he kept losing weight and his skin looked like old man skin with tons of wrinkles! It is so amazing to see him now, chunky with little healthy baby rolls.

The nurse who weighed and measured him thought he was the cutest little guy and kept commenting how alert he was, watching everything going on! The nurse practitioner was the one who did his assessment and I was very proud when she declare, "I see no delays in this little baby!"
We are still anxiously awaiting his development for this first year. We were told so many times in the hospital that he could have delays. That there was no way of telling how his brain was going to react and function to everything that had happened. Everyday when he does something new it is major news in our house.

After his assessment and shots we got to see Dr. Kebler and have a sit down in his office. He was so pleased to see his growth and hear about everything he is doing. He thought Mr. Gavyn looked great and called him a little piggy when I told him how much he eats!

Every mile stone is so important for all children but I feel doubly blessed that Gav is a miracle baby who defies all odds.

Gav's EEG

Obviously this is not a picture of Gavyn, I was going to take a picture today but I left my camera in the car. This is what it looks like when Gav has his EEG's done. Today marked his 5th EEG and I am hoping it is the last! The poor little man threw the biggest fit today while the tech was getting him ready.

The lady is so sweet and remembered us from the last time he had one done. First she has to measure all around his head and make red marks with a marker all over his head. Then she puts cream over all the parts that are marked and finally takes the little probes and puts this thick cream on them and sticks them on his head. Once all the probes are on they tape over them to hold them in place. I felt so bad for my poor baby, when we got to the hospital he was wide awake and happy as could be. I laid him on the bed and he was laughing at her when she started to swaddle him. As soon as she started the marking though he wailed. He kept looking up at me with scared eyes, filled with tears as if to say, "Why are you not making her stop?! I hate this!" Once I could pick him up he just whimpered for a minute in my ear and feel asleep.

His neurologist said he looked "perfect" when she saw him on Wednesday. Every mommy loves to hear that but it really meant a lot to me. He had to have the EEG done because he has been off of his seizure meds for 4 weeks now. His last EEG still showed some slowing in his brain that could mean more likely hood for him to have seizures. Yet he has only had the one and that was March 5th. Hopefully everything will be normal on this EEG and he won't have to go back on his meds. It was a hated ritual every evening to force it down his throat. It was seriously the worst tasting liquid I had ever tried and not being able to explain why you are making your baby take it.... But being on a medicine the rest of your life is better than having seizures.

Coffee Club

For the first week I was able to stay in the same room has Gavyn and not have to leave him. It was hard to sleep on the little pull out beds but it was better than leaving his side since we had no idea if he was going to make it. After a week he was moved into a room that he shared with another baby and there was no pull out bed. The first night that he got moved I broke down. I had no idea how I could physically leave him and go sleep at home. I had only been back to our house once since he had been put in the hospital. It was the hardest thing to be there with all of his baby things knowing he was in the hospital. I knew I could not go home again without him. My mother literally got down on her knees and begged me to go back to her house, see my other two boys and get some sleep. My only other option was to find a place to sleep in one of the waiting rooms out in the hospital. After a long time I decided to go back with my mom and sleep at her house. Ryan decided to go back and sleep at their house as well so we could both see the kids.

The next morning my dad got up and went down to the hospital between 5-6 to be there in my place. I had barely slept the night before and woke up with a start around 7, confused with where I was and what was going on. I was ready to fly out of the house until my mom told me that dad had gone down to the hospital and I could give him a call for an update. For the next week my dad got up early every day and went and sat with Gav. He would be there early enough to talk with his Neurologists who rounded very early in the morning. He would ask questions of them, talk to the night nurse and meet the morning nurse. If Gav was doing well Grandpa would get to hold him and give him extra love for me.

I would wake up around 7, pump milk for the day, eat breakfasts, get dressed and play with my two big boys. Ryan would go home to work after spending some morning time with us. Mom would get ready to go, we would swing by Starbucks on the way to the hospital. I still wonder where those baristas thought we were going every morning with two toddlers and three loaded caffeine beverages. I would arrive at the hospital around 9, in time for the doctors to round. Get the low down from my dad and the nurses. Some days were bad and those days my dad was able to stay with me. To be moral support and help me asks questions of doctors and nurses.

I have always been a daddy's girl and my dad would do anything for me. This is the best thing my dad has ever done for me though. To be there when we could not and give my baby love. And all the love worked because he is home and healthy now.

Doctor Clauss

There are 3 people I remember vividly from the first night in the PICU. Darby his nurse, Dr.Clauss the resident and Dr.Warner the attending. I remember them all for different reasons but very important ones.

Darby met us at his room when we were brought back. She was tall, her long brown hair in a pony tail, light green scrub pants and a gray long sleeve shirt. Since they did not know what kind of infection Gavyn had all the nurses and doctors had to wear masks and gowns going in and out of his room so as to not spread any disease to the other kids. She was checking his vitals and trying to calm me.

"Is he going to have brain damage from the seizure?" I asked her.
She looked up at me concerned, "You know, these little guys are strong and lets not jump to any conclusions until the doctors can figure out what all is going on."
So calm, reassuring, caring. She explained the nurse rotation, who the doctors were, the lab techs, to ask questions. She gave me some of the tools I used to make it through the next 19 days.

Dr.Warner.... Ryan and I had stepped out of the PICU and when we came walking back Dr.Warner was standing outside his room looking through Gavyn's file. He introduced himself, I noticed the sign hanging on Gav's room door that said 'Gavyn' and made a comment about it. He told us if we wanted it taken down that was no problem, I told him it was fine, I liked it. He wanted to know if we could go look at some pictures with him, we followed him over to a corner of the PICU, there were some computer screens and he pulled up Gavyn's CT scan.

"We took a scan of Gavyn's brain when he got here and..."
In my mind I am finishing his sentence, "everything is fine." Instead I hear,
"Gavyn's scan is not normal."
I melt into the seat he pulled out for me and feel paralyzed as he explains what they have found. I would not see Dr.Warner again for over a week.

And finally Dr. Clauss... I believe everyone has angels looking over them but few of us get to meet them face to face and have interaction with them. Since Dr.Clauss was one of the residents she was there almost every day of those 19 days Gav was in the PICU. It seemed like there were only 2 days she was not. I could be wrong. The night he was brought in and we sat at his bedside, it was her who was the first to tell me about Group B Strep. It was an infection they thought he had, hadn't I been tested when I was pregnant? I didn't even know what it was. There was something in her manner though and the way she would look at you when she talked. She actually cared. She wasn't judging me as a mother.

Every day she would check in, multiple times. If you have ever been in a NICU, PICU or ICU you have probably noticed the chaos. It comes and goes but everyone is always on their toes and ready for anything to happen. But every time Karen Clauss came to Gavyn's room she would look me in the eye and ask how things were. After every round she would hang back and ask me what questions weren't answered for me. What could she explain better? And anytime I would pass her in the hall she would send me a comforting smile.

I know that without Dr.Clauss looking over Gavyn and myself I would not have made it through that time. My dad once asked her how she and the others handled the PICU day after day. Her response,
"I actually have the worst nightmares every night about terrible things happening to all these kids. I am putting my time in here but all I really want to do is take care of kids with runny noses."
Dr.Clauss - Thank you for doing your time in the PICU and hanging in there. You are an amazing doctor. Thank you for genuinely caring about the kids you see. You will be an amazing pediatrician. I am sorry that you spend so much thought, conscience and unconscious worrying about these children. But thankfully one of your little guys made it out strong and healthy thanks to you. He will be an amazing man meant for amazing things. Thank you.

Dear Gavyn,

I have journaled all of my prayers for years. It helps me to stay focused and think about everything I want to talk to God about. The last prayer I journaled before you went into the hospital went like this,

"Father, thank you for another day and for Spring coming. There is always more hope and possibility in the air. Thank you for our families and friends who have been so helpful during this time. You have really blessed us!
Continue to bring work in for Ryan.
Thank you for our health and safety, please keep us that way today. Help me to adjust to 3 kiddos and to keep making it through.
Amen."

Little did I know that the next morning would be the morning from hell. That your health would be taken away for a time. Your health was taken but not your spirit and your will to live.

We had a terrible time picking a name for you. For some reason every name Mommy liked Daddy was not too keen on and the other way around. One day Mommy saw Gavyn and really liked it but we couldn't pick a middle name to go with it for awhile. Finally one night at Barnes and Noble, Daddy saw Elliot and we loved the two together. Little did I know that your name would fit you perfect and be amazing.

Gavyn: White hawk of battle. Gavyn is a form of Gawain. Gawain was one of King Arthur's knights of the Round Table.
Elliot: My God is the Lord

I had forgotten about the knights of the round table and during your stay I always called you my little knight. I would tell you how you were a fighter on your white horse going into battle and that you were going to win the battle. I am sure you can imagine your Momma crying when I looked back at the meaning of your name and was reminded of that.

You have the strongest spirit of anyone I know. Every day you would fight and grow and fight again. I see your go-get-'em personality every day. You are so strong and sweet. Going back and reading my journal from the time you were in the hospital is so hard. It is so painful to remember everything you have already been through and you are only 16 weeks old. In 16 weeks you have already lived a lifetime. Been through more than most people go through their entire lives. And you were victorious. You never gave up, you fought. You taught your family important lessons.

"It is so amazing to watch you improve and never give up. You are such an inspiration to Mommy and I will never be the same. You have really shown us all what is important. It is amazing to watch someone so small that you think is so fragile go through so much and fight and fight. You do not give up easy! You are so silly though - you like to trick people into thinking you are way more ready for things and at the last minute change your mind. Mommy knew when she was pregnant that this is how you were going to be. You like to fool people and keep them on their toes. I think life will be a wild ride with you." - Mom's Journal, 3/17

Mommy loves you my sweet White Knight. Kisses and hugs.

Naked Boy

One of the many problems Gavyn had while he was in the hospital was his body temp. Even before he went into the hospital I had noticed that he always seemed a little on the chilly side. I did not think a lot of it because it was February and our house is always chilly because it is older. I just kept him bundled up. Little did I know it was because he was getting sick and did not have the ability to keep his temp up.

When he was admitted they put him in one of the NICU beds that has a heater and it was always on. The day they tried to move him out of the PICU it (the heater) had been turned off and all day his temp was slowly dropping and the nurse did not seem to catch that (don't get me started on that day..). About time they moved him and the draft got to him his heart started to crash. It took about 2 hours to get him warmed back up for his heart to stabilize.

Once he had his external shunt put in the docs wanted him more elevated, they took him out of the NICU bed and put him in a normal crib. He had heat lamps put on him almost around the clock. He was dressed in long sleeve, long pant sleepers, usually a couple blankets rolled up around him to sort of hold him in place because of the angle he was sitting at with at least 2 more blankets over him.

One of the first times I got to hold him after his shunt going in I held him for 2 hours sitting in a rocker. It was the first time his whole stay (about 15 days at that point) that his temp went up to 98. Mom, Dr.Clauss and the nurse, Kenzie all joked with me that I would just have to hold him all the time when we got home. I told them I was putting him in the sling when I got home and I wasn't letting him out until he was 16, he would be plenty warm!

When he got home the first time we kept hats on him, two layers, sometimes a blanket and I wold check his temp once a day at least. After he went back to the hospital and had his internal shunt put in he did so much better!

Now he is my nakey boy! Every time I lay him on the changing table to dress him he just cracks up when I go to take his clothes off. He gets his big silly grin and laughs out loud sometimes. With the extremely hot weather the past couple days he has been going around with just a shirt on or just overalls - no shirt at all. He gets over heated being in the sling now and doesn't like to be in it for very long. Just a normal baby who loves to be in a diaper.

Cardinal Glennon, day 1, ER

It has been 13 weeks and 2 days since we took Gavyn to Cardinal Glennon. I still wake up in cold sweats in the middle of the night thinking about that first morning.

5 am, March 5, wake up to a shrill cry from Gavyn that I had not heard before. Sit up in bed while Ryan changes his diaper. He hands him to me, goes back to bed and I get ready to nurse him. It had been about 4 or 5 hours since his last feeding and I am sure he is starving. I am shocked when he does not start to nurse right away and seems a little limp. I hold him up and notice in the dim light he just does not seem the same. He opens his eyes and they seem dark and lifeless. My stomach has a sick feeling in it but I try to tell myself he is just not fully awake and I am over reacting. I cradle him and he starts to act like he is going to nurse. We sort of drift off to sleep for awhile. I startle myself back awake, realizing he still has not actually eaten. I hold him up on my shoulder and can feel him breathing very heavy. It is almost 6 o'clock and my mind is racing. What could be wrong? Is something wrong? Maybe I am overreacting, new mom syndrome. Can't call the doctor until 7. Did he just stop breathing for a second or was it just really shallow? Do we run him to the emergency room? I pull him forward to look at his face. His arms fall to his side, his eyes widen, his whole body convulses in a seizure it stops and his eyes roll to the sides.

"GAVYN! GAVYN!"

Ryan wakes, "What??!!"

"Get your phone and call 911!"

I frantically tell the operator our address, that my 2 week old son has just had a seizure, I am not sure what is wrong and I can not tell if he is breathing or not. She tells me to lay him on the bed, the paramedics are on the way. Before we can even think of what to do next we hear the sirens and Ryan rushes to the door to let them in. Two men, one in his mid 20's and one in his mid 40's come into the room. They check him over, ask a million questions. Gavyn is laying lifeless, his color ashen. I feel relieve that they are their and terror all at the same time. The older gentlemen takes Gav in his arms and listens to his heart for minutes while the other asks more questions.

"His heart rate is all over the place, 80's then back up over 100. We need to take him in now, what hospital?" he interrupts us.

"Cardinal Glennon."

"Get dressed, grab his car seat and meet us outside."

Everything seems to happen so fast. Nevin wakes up, I somehow tell Ryan to call my parents as I rush out the door and get in the ambulance.

They have already started giving him oxygen and his color is coming back. I get to hold him on the way to the hospital not knowing this will be my last time to hold him for over a week. The paramedic tries to be very comforting and reminding me that we are taking him to the best place where they can take awesome care of him. That everything could be fine and we could be back home in no time. We seem to fly getting to the hospital and I am completely disorientated by coming in through the ambulance entrance, I am not sure how Ryan will even find us, do I even have my phone?

We rush into the ER and are met by a nurse immediately who takes us into a room. I lay Gavyn down on the bed that seems to swallow him up he is so small. She is getting all the information from the paramedic and I am standing by him helpless as he looks around. After a few short moments he is hooked up to a monitor and before I know it he is descended upon by about 5 nurses and two doctors. I quickly move out of their way but am completely confused by what is happening. I break down crying, standing in the corner. It seems like forever before anyone notices me, a nurse comes over and rubs my back, shows me there is a chair next to me and helps me sit down.

"It is OK, you just sit here and cry." she says in a sweet voice.

Now I can see the monitor, his heart rate is in the 80's (100's-200's is normal for a baby), his breathing is in the 30's. I hear them talking about breathing tubes. Out of the corner of my eye I see Ryan and Mom, frantic and crying trying to find us. We huddle together in the corner. I do not even remember if the doctor told us or a nurse that they were going to put a breathing tube in him and we would need to step out. The next thing I new the Chaplin was there, a Chaplin does not come unless it is really bad. What is going on with my perfect baby?

We sat in the waiting room for an hour. Each time we looked out the hallway we could see his room with the curtain draw, people in and out. The tube was in. They took an X-Ray of his chest, they needed to readjust the tube. They take another X-Ray. Finally the doctor comes in. He starts telling us that Gavyn is really sick, he has some sort of infection, they have taken blood and would like to do a spinal tab, they need to identify the infection and it will take 48-72 hours for it to grow from the blood cultures (I knew this from Nevin's ER visit). He will need antibiotics. Will I sign a consent for a spinal tab. Everything is swirling in my head. I can't seem to grasp what is happening. I even tell Ryan, "Good, if it is an infection maybe we can go home by Monday and he will just be on some medicine."
Nothing is registering.
I get a text from a friend asking if she can come see Gavyn, no idea that we are at the ER.
I remember Skyler was supposed to have a play date.
We wait for the doctor to come back.
It is only 8 am and it feels like an eternity.
The doctor is back, we can see him. I rush for the room not prepared for what I will see. He is hooked up to machines, two IV's are in, a breathing tube covers his angelic face, he is knocked out from the drugs for the spinal tap.
"It is OK to touch him."
I rub his little arm and cry.

Eventually they are ready to take him to the PICU and we all move with him. Again we are put in a waiting room as they get him to a room but before long they are rushing him to a CT scan. Hours pass. Finally Ryan goes to the PICU and stands at the doors until a nurse notices him and tells him we should come back. I have no idea this will be my new home for the next 19 days. I don't even notice the other children, nurses, doctors, beeping... We almost run to his room. And there I sat, at his bedside for days.

Baby Gav Pics

Ok seriously, is he not the cutest little boy with a frog you have ever see?

Laughing, laughing, laughing

Ten perfect fingers on a sleepy baby

Wow, CUTE!

I have bubbles on my heels

The day that Gavyn was brought to the Hospital they ran so many tests on him to find out what was wrong. You would never know looking at him today. The spinal tab, the IV's, the PICC, have healed and signs of them have gone away. There is one tests though that still has remaining signs, if you run your finger slowly on his heel you can feel the little bubbles.

Once the infection was identified Gav had labs run on him every hour for a week. They would come in and prick his heel and take blood. This was how they could check his blood and see if the infection was going down. After a week they started taking blood less because the infection was gone. They still took labs every couple hours and finally down to once a day up until 2 days before he went home. His nurse Susan made a comment that she wondered if kids who had that many labs done for such a long period of time had sensitive feet for the rest of their lives. I wonder myself. I am sure the little bubbles will go down with time but for now it is just another reminder of what my little Warrior has been through.

My Nevers

To know my Nevers is to know looks and fists like these. He is my sweet boy with a big smile, bigger personality, and lots of hugs. He is my middle child (he was born with the complex) that just easily slid into the family. I love thinking back on all of my pregnancies and seeing their personalities even while in the womb. Nevin is that sweet kid that tries really hard to be good, to be on time but he always seems to get distracted and maybe even over sleep. His due date was Feb. 5th and when I saw my Doc that day he thought I had a week to go. I called him at 1am Feb. 6th in labor and Nevin showed up 6 hours later. He nursed good, slept good, cried little and smiled all the time.

Now that he is 2 he is all boy! His favorite movie is Cars, all day long you can find some sort of car or train in his hand. Always willing to ram it into a wall, chair, your leg, the poor dog, all while grunting "VROOOM!" Back up, move over, just plain get out of his way when he throws those arms back and charges. Yet, he is still my little cuddly sweet boy that will climb up in your lap, lay his head back and settle in for a long cuddle. He will find you, throw up his hands and give you the biggest, tightest hug for no reason. If I ever find myself crying during the day (mostly when I was pregnant!) Nevin has a sixth sense and can seek me out, he will just stand there with his hand on my knee and look at me with sweet eyes.

All 3 of my boys have special spots in my heart. Skyler tugs at my need to live life to the fullest. Go full steam ahead, don't stop, take it all in. What Gav pulls at is probably a whole other blog for goodness sake... Seeing God's goodness and being able to look it in the eyes. And Nevin... You have to know Nevin, he is 28 months and doesn't talk yet but boy, can he communicate. You just have to take the time, get on his level, be a little quiet. He reminds me to sit back and relax. Don't do things just because people want you to. Don't sweat the small stuff. Love on people. And don't you dare let anyone walk on you that you don't throw a fit and go face first in the carpet. :) He is my little lovey buggy.

Promises

I love rainbows, always have always will, but really who doesn't? Last night after it rained we took the boys out on the front porch and there were two huge rainbows. The one you could just see but the other one was so bright you could make out all the colors. A few days ago Sesame Street was all about rainbows and Skyler remembered about the colors and we got to really talk about it. He is getting so big!

Funny thing about rainbows, I can remembered distinct times in my life and emotions I was feeling because I saw a rainbow. I remembered riding in a car with my best friend and her two sisters when we were like 10. We had all gone to see a movie and it started to storm and the power went out. It really sucked to miss the movie but on the way back to their house we saw these amazing rainbows and it just made the day better. I once saw 2 complete circle rainbows while playing tennis in Washington. Someone hit the ball and when I looked up to hit it I saw the rainbows. We all stopped playing tennis, laid down on the court and just looked at them for a long time. It hadn't even rained by us that day. Magical.

They just don't make sense, rainbows. I mean we all know about light and water and reflections and all that jazz, but really? You never know when you are going to get one, how big it will be, what part of it you will see. God is so creative and funny like that. Just showing off his sense of humor and love all at once.

Promises... they are a funny thing and I am still trying to figure them out with God. The entire time we were at the hospital and even in the past with jobs and money I would pray and pray. In the back of my mind though I knew there are no guarantees. Just because I want something to go one way does not mean it will. My will is not God's will so prepare for more than you think you can handle. Somehow everything turns out better God's way. Harder, yes, richer I guess you could say though.

Yesterday I had been thinking about how so many things in my life led me up to Gav being in the hospital and me having the ability to handle it. So many people have told me how strong I am and I just don't really feel strong. I take what is given to me and sort it all out. And for my entire life God has been giving me small pieces of this chaos to deal with so that at this moment in time he could give it all to me again at once. Over the years I have probably reminded myself of the promise that God will not give you more than you can come up under thousands of times. I did not believe it this time though. I really thought he was going to break me this time. I felt like Job and I wondered if my faith was strong enough to not curse God.

Can I hold this weight? There are no guarantees. The two prevailing thoughts fighting in my mind.

And then you have things like rainbows. We did hold up. We did not have our son taken. There are promises. It rained, it stormed, there are still bouts of thunder but there will always be rainbows.

Making you uncomfortable?

This might come as a surprise or a shock to you but this picture of Gavyn is one of my favorites. Not just one of the favorites from his stay in the hospital either, just one of my favorite pictures of him. One of the walls in our family room has a bunch of frames that I change the pictures out of periodically. Two of the frames are 8x10's and I just got two pictures of Gavyn printed and put them in the frames, this picture is one of them. To me it was natural to print the picture and frame it. Honestly, when I went to get pictures ready I knew immediately that this picture was one of them, it was the second picture that took some time to pick out. It never occurred to me that it would be odd to frame this picture. Yet I wonder if it makes others uncomfortable (not that I would ever take the picture down). We have had people over to the house and when they look at our pictures people comment on every or any picture but this one. It struck me the other day that maybe they found it odd, isn't that something you want to not think about? For me it is such a big part of his life and something that is not just going to go away. It is part of his life story, our family history, and something that will be close to our hearts and minds for a long time. I know a time will come when this all seems like a distant memory but I also know that it could be years before my thoughts do not frequently go there. He is my little miracle and what a story he has to tell. This picture for instance...

The day this picture was taken sucked. Down right sucked and I hated it. In my last post I talked about the day we took many steps back, this was that day. Early that morning was when Gav could not breath on his own again and the breathing tube was put back in. The night before I had been able to hold him for 2 hours and when I arrived that morning the breathing tube was back in. The worst part about a breathing tube is that you are not allowed to hold your baby. I had no idea how long it would be before I could hold him again. This was right before the external shunt was put it. He had such a terrible time keeping his temp. up and when he would get cold his heart rate would drop. At first he was in one of the little baby cribs that has a heater in it but the doc wanted him to be more elevated so they put him in a big boy crib. There was of course no heater so they brought in heat lamps, thus the lighting. One of the nurses went and found these sun glasses for him so that his eyes would not be hurt. It is the only time I remember laughing when he was in the PICU. We just all laughed out loud because he was so cute! He looked calm, chill, just tanning on vacation. It felt normal. Something cute of your newborn and you take a picture for the scrapbook, the picture frame, send it to the relatives over e-mail. It was a small present before all hell broke out and I thought that I would lose him.

There are all these stories that have a feeling of needing to be told. And how many lives will he touch, will I touch, that relate back to these times that no one will know about?

Mr. Pelican

Today I was playing with Gavyn in his crib and he was watching his stuffed animals. I picked up his little puppy dog and put it on his tummy. He smiled, laughed and started to grab for it, trying to put it in his mouth! These are the little milestones that bring tears to my eyes and a smile to my face. We still are not sure how Gavyn will develop, he could grow up to be a neurosurgeon or have delays of any kind. When a small or large marker is made it will always bring tears to my eyes for little Gavyn.

Tonight as the big boys went to bed and Gavyn was laying on the couch with me I got his puppy again to play with. I also grabbed his Panda Bear and Mr. Pelican. I lined them up on the couch for him to look at and talk to. Puppy Dog has a cute story, when Gav was in the hospital my parents kept Skyler and Nevin. One day when Mom took Skyler out he saw the Puppy and said, "Grandma, can I buy the puppy for Baby Gavyn, I have a penny." So sweet and innocent. The Panda was also bought by Grandma while Gav was in the hospital to sit in his bed with him. But Mr. Pelican was there from the beginning.

Mr. Pelican had been put in the bed Gav was laid in when he arrived at Glennon. We do not know where he came from or how he made it into Gav's bed but he did. The first few days he was in the PICU he had a wonderful nurse named Susan. Each time she would come in his room she would talk to him, joke with him, call him her little friend. She is the one who discovered Mr. Pelican in the bed and always made sure he was in a place where Gav could see him. She would lay him under his arms like he was holding him. It was a small thing that gave me so much hope. Gav's limbs were so weak that he was not moving them. I would sit there and stare at that Pelican under his arm waiting for him to just grab at it. Of course he didn't, he couldn't but I hoped.

Tonight we went to a worship night at our church. We took all three boys and we sang one of my favorite songs that had always brought tears to my eyes. I thought I had been through a lot until this happened with Gav.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave.

He is a God who can move mountains and he did with little Gavyn. It has always been hard for me to comprehend how God could send his Son to Earth and let him die. And yet, now I can understand part of it more now. There was a moment when Gavyn was in the hospital... he was so sick. We took a few steps forward and then we took about 10 back very quickly. He had a breathing tube in, feeding tube, IV's in one hand and one foot and also his PIC line in his other leg. The pressure from his hydrocephalus had built up to the point that it suddenly pushed his brain down towards his spine, his heart was having trouble keeping up, he couldn't breath on his own... it was very scary. The neurosurgeon came and put the external shunt in which immediately relieved the pressure but he was still sleeping from the meds. I stood at his bedside crying, not sure if he was going to wake up or not. When he did open his eyes for the first time he tried to cry but there was no sound because of the breathing tube and his eyes shot open, filled with terror as they looked around. I touched his cheek, said his name, tried to soothe him, he fell back asleep. That is when I prayed for God to take him. It sounds horrible I am sure but I prayed that if he was not going to recover, if he was going to be brain dead, I wanted God to take him home. I wanted what was best for him, not for me.

Those are the feelings I am still trying to process. That is why I cry over him, I didn't think I would come home with him. God is good, He is mighty to save. He let me keep my angel, He didn't need to bring him back home yet.

My First Post

It has been 4 weeks and 5 days since Gavyn came home from the hospital from his last extended stay. We have only been back in the ER once since that day, have had 2 tests done and 3 doctor visits. Today has been a lot. He is 3 months today and must be going through his 3 month growth spurt. He has been crying a ton, wanting to eat more but than not wanting to eat because he is so fussy. Normally he is quiet, calm and a love to be around. If we had not just seen his Neurosurgeon yesterday I would probably be panicking right now. Thankfully he had been like this yesterday as well and they were sure it was just his normal growth spurt. How do you not panic though when all the sings for a shunted babies shunt not working are the same as a growth spurt or just colic? It is being between a rock and a hard place, take him to the ER every time he cries or wait at home and hope nothing terrible happens. Add to that all the Mommy guilt a mom like me is bound to have and there is no winning.

Today I finally broke down and realized that my Grandma did indeed pass away last weekend and I won't ever be able to call her or see her again. We have had a rocky relationship for awhile now. She had given up on life when my Grandpa passed away and she has been sick for a really long time. She had stopped leaving her house years ago and trying to go see her with my two wild toddlers was never easy. For the last few months (since Gavyn was born) she has not cared about anything, she never asked how Gavyn was when he was in the hospital. She just did not get it. But that meant that we did not make the time to go see her once things started to settle at home. She never got to meet her 3rd. Great Grandchild. Another spoonful of guilt added to my plate.

She was a wonderful woman though, she married a handsome adventurous man who took her all over the world. They were generous with the many blessings they had and she loved all of us a lot. The woman I loved the most and looked up to the most passed a long time ago and I had been waiting for her to come back... she never did and that is hardest of it all.

Maybe one day the intense feeling of panic and threat will go away that comes after having a child be terribly sick. I don't know when that will happen for me. Right now I am just trying to process the emotions I am having as they come to me.