Home Again

After three nights in the hospital, Addison was released on Friday to come home!! They did two fast act MRIs while we were in the hospital to check that the brain tissue was responding to the external drain and the internal pressure adjustment. So far, so good. We have a follow up appointment with Dr. George, our neurosurgeon, on August 3rd.

While we were in the hospital, Addie turned 2 mths old !!

It's amazing how much more I appreciate lazy home days after spending a few nights in the hospital. I actually slept surprisingly well while we were in the hospital. But it's reassuring to know she's hooked up to a machine that would beep if she stopped breathing! We were able to relax quite a bit since Addie was sleeping so much as the anethesia wore off.

Thankfully, Adam was able to stay with us two of the three nights before he had to return to work.

Melissa was able to drive up to Dell Children's Friday in our vehicle with Addie's carseat in it to pick us up. Mom stayed a few extra nights after we got home. I was able to get some laundry done, and closets rearranged in prepartion for school resuming soon.

Addie has been a little fussy on and off and is still pretty sleepy. I don't know how much of this is related to her ordeal last week or just her age or what. I'm looking foward to her having more wakeful aware times.

We have a busy next few weeks planned. Dalton and Chase are here for a vist for a few days, then Jared is coming at the end of the week. Melissa is swapping Jared out for Raychel this weekend and Raychel will be spending all of next week. Hoping Raychel will come with Addie and I to her neuro appointment.

The week after Raychel leaves is blissfully unscheduled (as of now) and then we leave for Duke for Addie's stem cells on August 13th.

Home for another week and then school starts back August 23rd. CRAZY!!

Addie's Shunt Revision

We're hanging out in her room now. Everything went well during her surgery. Dr. George re-directed the proximal end of her shunt so it's pointing into her ventricles the way he had originally planned on it pointing, and replaced her valve with a fancy schmancy programmable one. She went from a setting of 40 on her fixed shunt to 110 on her programmable shunt. Translation - from very little resistence for the drain to medium resistence for the drain which will slow down the flow of CSF out of her ventricles. She had an issue with overdrainage - too much fluid was draining, too quickly and was causing her brain to collapse in on itself. This collapse of tissue caused fluid to build up between the cortex of her brain and the dura space. This fluid pocket is called a hydroma. To fix this, the neurosurgeon also created a new burr hole and drained off some of the fluid from her subdural hydroma and inserted a catheter to drain more over the course of her stay here.

We were paged within an hour and fifteen minutes of her going back to meet with George in the consult room so he could let us know how it went. Then about 10 mins later we were paged back to recovery. They let us both go back which was nice. She was more heavily sedated for her surgery than her MRI so we were not met with a screaming, starving baby like last week. She was still pretty out of it. I tried nursing once but she wasn't wanting to latch on. The external drain was capped, causing some confusion as to whether or not they were going to do the external drain or just leave it capped and wait and see what the MRI showed. It wasn't until George made rounds that he hooked the cath up to the external drain. Kind of eerie knowing that there's an open hole in her head and I can see the fluid pooling in the little reservoir. Very similar to what's happening inside her head as well. Thankfully because this drain is connected to the subdural space where the hydroma is, moving her isn't as concerning as if it was a true EDV draining the fluid off her ventricles. Basically because she has her shunt still in place regulating the internal pressure. The external drain is just removing the fluid that has collected between the cortex and dura and there's only a finite amount of fluid to drain off.

She's doing great so far, as a patient, though I imagine the meds are helping with a lot of that. The true challenge is going to be when she wants to be held and nursed and comforted more by me. We'll have to clamp off the drain to move her and then re-level the pressure setting with her ear line everytime we hold her. Going to try to leave her laying in her bed as much as we can. I'm pumping so we can bottle feed her the breast milk. She hasn't really been interested in eating yet. Hopefully soon.

For now, Adam and I are trying to enjoy the quiet time together while we have it. So thankful we're on the other side of the surgery and she's doing well with her recovery. Praying that she continues to rock it out!

1 month old!

Addison is one month old today! Can't believe it!!

Addie's NICU Stay Part 3 and Coming home!

After I came home, the days ran together. Sleep, eat, pump, drive to the hospital for her 3pm feeding, come home, eat, pump, sleep, go back for her 9 or midnight feeding, sleep, eat, pump.

We did this for 5 days. Addie started gaining weight, slowly. Which if you consider how much they were draining out of her head, it was impressive.

Her feeds were up to 120mls (4 ozs) at most and an average of 80mls most times. We did have an upsetting feed one night where she basically threw everything back up. We think she overate. They were adding powdered formula to my expressed breast milk and she didn't like it very well. They started her back on antibiotics because they didn't like the way her incisions were looking, though the neurosugeon's PA said they looked great to them.

Jack shared his monkey with Addie, so she would have something to look at.

On Monday, May 31st, she had her follow up MRI. This was supposed to save us an extra outpatient MRI and visit to George's office. The idea was to get it done while she was still in the hospital to make it easier on her and us. And it would've worked.

Adam and I visited late that night (my second visit of the day) and Dr. Dekowski was the one on call. He came to her bedside and I could tell by the look on his face that something wasn't quite right. I remember looking at her for reassurance that it couldn't be that bad. The MRI showed the shunt was working, the ventricles were smaller.... BUT there were new brain bleeds that had not been there on her first MRI. Dr. Dekowski was pretty frank about being puzzled about them. If she had been a preemie they wouldn't have been as surprised. The good news was that her bleeds were intercranial and not interventricular. Interventricular brain bleeds are bad for people with shunts because the blood junks up the shunt track, which causes the shunt to fail. Dr. Dekowski showed us the MRI. It felt very strange, following the neonatologist through the back STAFF only doors to view MRI images at midnight. The bleeds were very evident and looked large to my layman's eye. Dr. Dekowski had spoken to Dr. George, and George was perplexed as well. He did say he had seen it before, though rarely.

We spoke with Dr. Dekowski, standing in front of the computer with Addie's brain images pulled up, about her going home. She had lost weight that day, most likely because the sedation had made her sleepy and she had slept through her noon feeding. Dr. D said she could technically go home the next day but he wanted to see her back on the upswing weight wise. He hoped by Wednesday, June 1st.

I went back the next day for a feeding and to have some cuddle time.  I brought the carseat carrier with me so they could do the car seat study. For those not familiar with that practice, Addie had to sit in her carseat for a certain number of minutes and they watched her vitals closely to make sure she could tolerate the position sitting in a car seat requires. The main concern with Addie regarding the carseat, was the size of her head potentially causing her to have trouble breathing. We didn't want any desats. She passed the test with flying colors that evening.

"What the heck is this thing?"

Adam and I went back again that night and I spoke to the neonatologist on call about Addie's care. I basically said that while we were extremely grateful for the level of care that Addison was receiving at St. David's, I was beginning to see where she would benefit from a consistent care giver. It seemed like we had a different nurse every shift. We had been bumped to a step down bay a few days before and she was at 1:4 nurse to patient ratio and we never saw the same nurse twice. I caught the nurses not following her feeding plan, using the wrong type of nipple on her bottles, etc. I was her mom. I was slowly gaining confidence in handling her and my mama bear instincts were starting to kick in. In the beginning, I very much had the attitude that they knew what was best for her medical care and that we would support (most of) anything they decided on. But we were so close to going home, and all we were waiting on was for her to gain weight. Neuro had released her with the understanding that we'd follow up with a MRI with contrast for the bleeds. And I was good at fattening up babies! I wanted her home. Where I could handle her needs. Her needs were needs I knew how to meet. And it changed my perspective. I got a little less patient with the doctors. I was nice... I'm always nice. The neonatologist after I was finished outlining my newfound position, basically said well done on handling it tactfully. I feel for the people that work in the NICU. I get that they are sometimes made out to be the bad guys and that was by no means my feelings. I was just ready to take care of my baby.

I went back the next day, June 1st, by myself, trying desperately not to get my hopes up. I had called at 1:30am to check on Addie, mainly to get an update on her midnight weight check. And she had GAINED!! I was thrilled and so cautiously optimistic as to what that meant. The neonatologist I had spoken with at length the day before had said even if she just held her own weight, she'd be happy. I was so scared to be hopeful but hope filled me nonetheless.

I scrubbed in for what I prayed would be the last time and went to sit at Addie's bedside. Her noon feed was coming up and I was ready with fresh milk!

The first glimpse I had of Addison, walking up to her NICU bed for the last time.

The nurse, yet another new face, walked up and we were talking about her latest orders and notes etc. She mentioned her weight gain and I said that I knew, having called in the middle of the night. She told me she still didn't have a discharge order but she had been told she was going home that day. Sweet words to my ears.

I stayed all afternoon. Sat and held her. It was like I refused to put her down for fear they would change their minds. The one time I did put her down, she wasn't very happy. She was just as ready to come home as we were to have her there.

Not happy at being put back in her bed.

We had been asking about what we needed to do for discharge on our end for weeks and were told this day that we both had to take an infant CPR class before we could take her home. Nice to know on such short notice. Adam had just been there the day before and we could have done it then. I texted Adam, who was at work, if he could get off work to come do the class so we could take her home. He later told me he told his boss that if he wanted to stay married, he had to take a CPR class so we could bring Addie home that day.

He arrived around 3:30pm and we took the class at 4pm. Dr. Cho, another neonatologist came by and said we were good to go. He thanked us for making things easier on them, having all our appointments already set up and having the carseat study done already.

It was a little surreal. The feeling of freedom that comes after having to leave her behind so many times. 

Her empty NICU bed.

She was ours now. Not a borrowed baby twice a day. My heart and mind knew that didn't make sense but it was kinda how I felt. We loaded her up in the carseat and Adam went down to pull the car around. Addie's nurse walked she and I and all her stuff down to the car and away we went. It was a fantastic feeling after spending months worrying if she would ever come home.

In her carseat, heading home!

Adam took me to Jimmy John's for a sandwich. I had been at the hospital all day and hadn't eaten at all. We sat in the car, in the parking lot, while Adam called his mom and I sent out a group to text to family and friends. We hit rush hour traffic on the way home and didn't care.

We arrived home to a decorated sign on the front door that mom and the boys had been working on all day.

As soon as the boys had heard Addie might be coming home, there was no nap taking for them.

Huge big brother grins!

 Many pictures were taken and it was amazing how quickly we settled in.

I had my family of five. In the same room, at the same time for the first time that day. Grayson and Jackson finally got to lay eyes on her in person. Later that night, Jackson got to hold her, on the boppy while I sat beside him on the couch. Within seconds of me handing her to him, he said "She's too heavy!"

Grayson got to hold her the next day. I swear she recognized his voice. She was fussy and she settled for him immediately and went to sleep.

So blessed.

Addie's NICU Stay Part 2

Tuesday, May 24 - We visited Addie several times this day. Adam got to hold her in the morning for about 45 mins and gave her a bottle.

They had already bumped her feeds up from 10 mls to 25 mls and then again to 45 mls. She, thankfully, had very few issues with the feeds. We had been told the day after her surgery, before they began feeding her, that she had a delayed swallow reflex. Something that could have been from neurologically damage or from the intubation process or just from being slightly preemie. The risk with a delayed swallow reflex is aspiration and can lead to problems long term that could eventually require a permanent feeding tube. So seeing Addie doing so well with her feeds and them bumping her volume up so quickly was an awesome thing to witness. We did have to feed her side lying for a while and she was on a slow flow nipple but that was all the help she needed.

I got discharged by my ob that evening, but we were able to room in - basically stay at the hospital off the radar. You're there but you're not there. You don't get nurse visits or a room bill. You just sleep in the room they assign you and are on your own. I was very thankful that we were able to do this and planned on staying as long as they would allow. We did have to change rooms from our upgraded suite to a normal hospital room but that was fine. My doctor didn't get to the hospital til 7pm that night, as she was coming from North Austin. Adam had gone home to take a nap so it was just my ob and I. She stayed for an hour visiting! So blessed to have her as my doctor!! We discussed how quickly I could drive as that was a major factor in me going home or not - whether I could get back to the NICU by myself.                                                

After Adam returned from his nap, we went back to the NICU and gave her the 9pm feed and then it was my turn to hold her for an hour. At that time we were only allowed to hold her twice a day, so we each got a turn. We still had to keep her as flat as we could. They had tried to sit her up on Sunday and it had induced tremors so her little system couldn't handle the pressure still. We didn't push them to try sitting her up again. We were content for things to take as long as need be.

Wednesday, May 25 -
We definitely had our routine down by this time. Sleep til 9am. Get up to take pain meds, eat breakfast, pump and then make it to the NICU by her 12pm feed. Back to the room for a late lunch, more meds, more pumping then back for 3pm feed just me while Adam returned home for a nap. Then both of us back after shift change for her 9pm and sometimes midnight feedings. Late dinner. There were several places that delivered around the hospital... as late as 3am!

This was the day that I ate peanut butter crackers while pumping and thought I got crumbs in the milk and had to pour out 90 mls. I nearly cried!! Because I had to toss so much out, Addie surpassed me on volume that day. Which was a wonderful 'problem' to have. They started suplementing formula.

This was also the day that I noticed that I didn't do so well by myself. I was ok as long as I was in the NICU or with Adam. But sitting in the room by myself was when the hormones and gravity of the situation would hit me. Was she doing fabulous, as well as we could of possibly hoped and prayed for? ABSOLUTELY. But it's still a stressful, emotional situation to have a baby in the NICU. Everytime the boys would come visit, I felt torn. When I was with them, I wanted to be home. When I was with Addie in the NICU, I wanted to stay by her side 24/7. I had to give it some real thought and figure out what *I* needed. I knew my kids needed me, all 3 of them.  And unfortunately the three of them were not in the same location.

A huge deciding factor was that Adam had to return to work that Friday. And I would be at the hospital - alone - a lot more. I knew I could spend more time in the NICU than I had been, sitting by her bed all day. But at that point... she was still sleeping a lot and there wasn't much I could do for her. And I quickly figured out that her schedule was pretty set. Feeds every 3 hours. I could easily time visits from home to be there for 2 or 3 feeds a day. We were fortunate enough to only live 10 miles from the hospital. So I was seriously leaning toward going home. When your 3 old son asks you to come home, it's very hard to say no. And Jackson was asking everytime he would come visit.

Thursday, May 26 -
We visited in the morning, ate lunch in the room and discussed me going home that night with Adam, took a nap, and went back up for the 9pm feeding. Dr. Dekowski happened to be there that evening and we talked to him about her progress. It was at this point that he said it would be a matter of days, not weeks before she was released. Which was FABULOUS news. They needed to get her feeds up, which was going extremely well and seemed like it would just be a matter of time. Then they needed to see her gain weight (she was still losing because of all the fluid draining from her head). We were told this evening that we could pick her up as much and as often as we liked and that she had been cleared from the neuro docs to be tilted and held upright as she could tolerate. We were ecstatic! Because she could be handled a little less delicately, I was able to nurse her for the first time that night. Which worked out wonderfully.

I was high on love hormones for our trip home. Adam was returning to work the next morning and I knew that me staying overnight alone was not in my best interest. It was hard putting my interest ahead of Addie's but I knew she was in good hands, and I knew that ultimately doing what was best for me would be to her benefit as well, in this situation. She had already surpassed my milk production. I had been walking the bottles down to her after each pumping session but thanks to my cracker crumb concerns, I was way behind. I could just as easily transport her milk in a cooler to her once or twice a day as I could walk it to her four times a day. It wasn't easy, but we left to go home that night.

We hadn't told the boys we were coming home, so we surprised them with our arrival. Was a great feeling to be home after being in the hospital a week, albeit bitter sweet.

Addie's NICU Stay Part 1

Sunday, May 22 -


We called down to the NICU and were told Addie had not only been extubated but she was on room air only, not even a cannula! We were so thankful and grateful to God for this. We felt a huge weight lift off of us. Not that we were concerned that she had complications from the surgery. But to know that we were through the surgery, she was breathing completely on her own and they were talking about starting to try to feed her soon.... well we felt like we'd won the lottery. It was such a relief. We knew we had a long road ahead of us but we felt like we were well on our way. And that our daughter was obviously a rock star.


Adam went down to the cafeteria and had breakfast. I ordered my bagel from 'room service' and pumped again. We made our way to the NICU by 10am. And were met with this beautiful sight.

I believe we visited four times this day. After shift change that afternoon, we went back and were greeted by Ethel. Ethel was by far our favorite NICU nurse, hands down.


She introduced herself  and said that the next night would be her last because she had been fired. Adam and I just stared at her with our mouths hanging open a bit I'm sure. She laughed and said she was just joking, she had quit. Her husband had gotten a job in Misery.... er I mean Missouri. (her words!) When she would make Addie mad by moving her around, she would tell her that her name was Minerva not Ethel, so she couldn't report her. LOL She was just what we needed at that time. We talked to her for hours that night.


This was also the night that the couple next to us offered to have prayer for Addie and we all stayed by our respective beds (can't have more than two visitors by a bed) and had prayer.


We were able to give Addison a bath this night which was a bit of a challenge. At one point Adam picked her up so that Ethel could change her bedding. This was when we saw the back of her head for the first time after surgery. Dr. George had warned us that her head was going to get weird, and we thought we were prepared for this after pouring over what felt like hundreds of blogs while pregnant but it's still different when it's your child and it's in front of your eyes and not a picture.


I'm guessing because of her cyst, the posterior bone fell in much more quickly than any of the other bones. This may be normal and I had just never seen a picture of another hydro babies head from the back. I don't know. But it was the most unsettling thing we had experienced at that point.

A few pictures of her first sponge bath at 3 days old!

You can tell by the look on my face that I was scared of hurting her or pushing her reset button as Adam called it. Anytime we moved her head too much, you could tell it caused her head to hurt and the pressure to shift. It was literally like pushing a reset button and waiting for her to come back around.

We went back to the room and attempted sleep again. I believe it was this night that I finally started feeling the effects of my surgery and had to ask for pain meds above just motrin and tylenol. I knew I had to be able to stand by Addie's bedside, so I took the help from the meds.

Monday, May 23 -

We found Addie wide awake and waiting for us when we arrived to the NICU this morning. It was such a wonderful sight!!

They were able to take the little ducky sticky off which was her temperature gage. Which means she was able to maintain her own temperature without the aid of the heater above. She had never needed much heat but it was nice to see her all snuggled in a blanket and  with one less tether. We went back to the room for lunch and a nap. Adam was going to run back home for a while to sleep and do laundry.

We got a call from a new nurse and then from a neonatologist. Addie had been moved to a different location in bay 4 (instead of bay 3) and they were going to try to feed her at her next assessment at 3pm.

Change of plans!! We rushed back to the NICU to make her first feed and I was very thankful we were there to witness it. She took right to it and drained the 10ml that they started her on and then she passed out and slept three hours straight. Bless her heart, you know she had to have been hungry, having only had fluids through her UVC line (in her belly button).

Very first bottle attempt

Adam went home to nap about the time Mom, Melissa (my oldest sister) and the boys came up to visit. Mom and I decided we would hurry and try to make the 6pm feed. Everyone walked down with us to the NICU, me still being pushed in a wheelchair up the horrible ramp to the NICU. They had built the NICU between floors 3 and 4 so it was one heckuva ramp. Jack and Grayson were going to turn back around with Melissa and walk around and explore some while Mom and I went in for the feeding. Well, Jack got very upset when he realized he wasn't going to get to go past the doors. He started bawling and saying over and over "I want see Addie! I want see Addie!" Well I lost it. I dropped off my cell, camera, bottles of milk and wheelchair in the NICU waiting area and went back out to where the boys were and picked him up. All 42 pounds of him. And yes I was just 3 days post op but I didn't care at that point. He needed his mommie and I needed him. We stood there on the ramp outside of the NICU doors and both cried. I had thought to prepare my 8 year old about not being able to see Addie. Didn't even occur to me to warn Jack. It was heart breaking. I handed him back off to my sister and mom and I went in to watch Addie eat again.

 That evening, after Adam got back from his nap, he and I went back down to NICU and watched her get her third feed of the day and I got to hold her for 45 mins!! I hadn't held her since the brief 5 min hold the day she was born. It was wonderful! Quite a different experience from the first time I held her. It definitely made leaving her behind in the NICU a little bit easier.

Addie's Surgery Day

Saturday, May 21 -
After about 3 hours of sleep, we were awake at 4:45am because of a nurse check so we decided to head up to the NICU to see Addie before shift change. We scrubbed in and made our way to her bed. We sat with her for about an hour and took several pictures. Filled out the permission slip for surgery. We went back to the room for more pain meds and then back at 7:00am to meet with Dr. George before the surgery. He showed us the MRI from the day before and this was when we found out that Addie had a cyst behind her cerebellum. He mentioned that it was 'kind of like a Dandy Walker variant cyst'. It was never found during the ultrasounds. The cyst pushed the cerebellum forward which caused the narrowing of the aqueducts. Typical Dandy Walker malformation has four things involved: a cerebellar cyst, enlarged fourth ventricle, agenesis of the vermis (part of the brain located between the two cerebellar hemispheres), and an elevated tentorium. Of these four things, all that Geroge could see was the cyst and the elevated tentorium. Which is why he called it a variant of Dandy Walker.


After meeting with the anethesiologist, we kissed Addie one last time and went back to our room.


We decided we would be better off showering, eating breakfast and pumping milk for Addison than waiting in the NICU waiting room for an hour and half. Dr. George said he would come let us know how it went.
And he did about an hour later... he came to our room and joked about how large my laptop was. "No wonder I couldn't stop googling." he said.


He told us the surgery went well. Shortly after he left the antesiologist came and told us she was back in the NICU and we could go see her when we wanted to but she was still intubated and groggy from the medicine.


We tried to wait for her to be extubated before we went to visit but she had to stay on it longer than we originally hoped, so we returned that night to visit for about an hour.


Post op pictures: