The Domestic Princess

3 Months Old

2012-05-30T14:54:00.001-04:00

Jackson is 24 inches long and weighs 13 lbs now. Our little boy is growing strong.

Jackson has had follow ups with his Cardiologist and Endocrinologist this month. We are still waiting for results from the heart monitor and I'm hoping to hear back soon. His Endocrinologist thinks we need to keep Jackson on an every 4 hour schedule until he's 4 months old, then we will try to stretch him to 5 hours at night.

This month Jackson has learned to grab for toys. He loves the toy bar on his Fisher Price Infant to Toddler rocker. He's also learned to crack up laughing at Mommy and Daddy. Which results in us doing the most rediculous things to get him to crack up again. We are still working on head control and rolling from front to back but he's getting stronger every day.

Month 3 Our Favorites Things..

2012-05-30T14:42:00.000-04:00

In Month 3 we've found our favorite things changed again...

Summer Infant Swaddle Me: We are now in size large and using these exclusively at night. They are so easy for our middle of the night feedings and he goes right back to sleep when he's wrapped up in this.

Hooded Bear Blanket: Jackson loves this blanket. It's so soft. If you lay him down on it, it automatically equals nap time to him.

Precious Firsts Puppy Lovey: As you can see in the picture above Teddy Bear blanket and Lovey is Jackson's favorite way to nap.

Kinderglo Night Light: This is one of the coolest products that I've used. I can't say enough good things about it. We keep this in the crib with Jackson since this night light will not get hot. It is also BPA free so ok for kids to chew on. I love that this can be a night light that he uses once he gets older also.

Rockabye Baby! Lullabyes: We have the Bob Marley Lullabyes and Jackson uses this to go to sleep every night.

Twinkie Tush Little Tush: Our favorite cloth diaper right now is our Little Tush from Twinkie Tush. It's a fitted diaper, which requires a cover, but this diaper holds 4 1/2 hours and is barely wet. These will definitely be a good night time solution for us when we are allowed to let Jackson go more than 4 hours between feedings.

Under the Nile Green Bean: Jackson is getting good at hanging on to things (for a little while at least) and he just smiles away at his green bean.

We still use the Fisher-Price Infant to Toddler Rocker every day and our BumGenius Smalls. Jackson is getting so big and growing up way too quickly.

We have highs and we have lows

2012-05-08T16:29:00.001-04:00

Our little boy has been growing up so fast, I can't believe how fast time is going. Jackson had his followup Cardiologist appointment a week ago and they sent us home with a 24 hour monitor to make sure he's not having anymore SVTs. We won't get the results for another few weeks. If Jackson has any SVTs in the recording they will want to put him back on medicine for it.

Jackson is such a happy baby. He just smiles away all day long. It makes Chris and I feel like we must be doing something right. Unless Jackson is hungry or needs his diaper changed, he's very content with just hanging out and observing everything around him.

Jackson has been testing out his sound making ability lately which is so fun to listen to. He likes to 'La' alot.

Since his head was shaved in NICU his hair seems to be growing back in in what looks like a buzz cut. We get so many comments when we take him out about all his hair.

A few weeks ago we also followed up with Genetics and they couldn't find anything they wanted to test Jackson for right now. So we will followup with them again in September to make sure nothing else shows up they would want to run tests for.

Jackson's blood sugars have been overall very good and we are finally on an every 4 hour schedule with him. We only had one night where he had a really low (40s) blood sugar and it wouldn't come back up without a sugar water bottle. It was very scary but we made it through. Jackson's sugars have been great ever since also. We have a follow up appointment with his Endocrinologist in 2 weeks. We hope to start talking about sleeping through the night then.

Overall it seems we have a very healthy baby boy on our hands and we are loving every minute of being with him.

Month 2 Our Favorite Things...

2012-04-24T08:00:00.000-04:00

Below is a list of all things we have found useful in Month 2....

1. MAM Pacifiers: Jackson prefers these over the Soothies now but will still take a Soothie (but only in desperate times).

2. Summer Infant SwaddleMe: For warmer nights we love this swaddle blanket. It's Daddy-proof and keeps Jackson nice and snug.

3. Dr. Brown's 8 oz Bottles: Jackson graduated to the 8 oz bottles since he is consistently eating 5-6 oz now.

4. Fisher Price Infant to Toddler Rocker: Jackson wants nothing to do with the swing. This is his favorite seat to sit in. Put on the vibrate and he is out.

5. Halo Sleepsack: It got cold again in Ohio and the fleece sack has been wonderful

6. Snuggles of Love Guitar Blanket: This is one of our favorite blankets right now. It's perfect for all the changes in weather we've been having. Not too heavy and not too light. Plus it's absolutely adorable!

7. BumGenius Newborn Diapers: These finally fit my skinny legged kid and they are so easy to use. Jackson has almost grown out of the absorbancy in the Lil Joey's so I'm really glad we have these. They are holding up great and give us hours before changes.

2 Months Old

2012-04-23T16:17:00.000-04:00

Jackson is 10 pounds 8 ounces and 22 inches long. He has put on 3 pounds and grown 1 inch since his last Pediatrician appointment.

He's now smiling and cooing all the time.

His 2 month shots were a litte miserable and my poor guy was really fussy for the rest of the day. We are still doing really great with our cloth diapers. Jackson is still in Lil Joey's and Bumgenius XS because of his skinny legs. We are hoping to move up to Bumgenius Smalls soon.

He still on an every 3 hour schedule during the day but we finally were able to move him to a every 4 hour schedule at night. Our new schedule looks like this:

2 am: Feed
6 am: Feed
8 am: Diazoxide
9 am: Fee
12 pm: Blood Sugar, Feed
3 pm: Blood Sugar Feed
4 pm: Diazoxide
6 pm: Feed
10 pm: Blood Sugar, Feed
12 am: Diazoxide

Jackson is tolerating the 4 hours at night really well. I can't believe how fast he is growing.

I'm still on Maternity Leave until May 14. As much as I'm looking forward to going back to work (I love my job), it's gonna be so hard to leave him and not spend all day with him.

Back and forth...

2012-04-09T14:45:00.000-04:00

It has been a crazy three weeks but Chris and I are finally feeling like we are getting the hang of being full time parents (and feeling a little more rested).

The weekend of March 31st we got to have Jackson's newborn photos done. One of our old coworkers opened up her own studio Jehan Inc. and came to the house to take Jackson's photos in his nursery. Last week she emailed us a few previews. She is so talented, don't you agree?:

Last week we had an appointment with the Endocrinologist. I was really excited for this appointment hoping we could start Jackson on an every 4 hour schedule. After meeting with the Endocrinologist and going over the last two weeks of blood sugars with him, he decided we were going to move Jackson's Diazoxide (sugar meds.) up .1 mL/ 8 hours and move him to an every 4 hour feeding schedule. Once I got home Chris and wrote out a new schedule and starting doing blood sugars with every feeding to make sure he was tolerating it. Unfortunately he wasn't. We had some really low blood sugars (55, 60, 57). So I called the emergency day line to talk to the Endocrinologist. He wanted us to move Jackson's Diazoxide up another .1 mL/8 hours. We started that right away and Jackson's sugars were still not tolerating the new dose. Chris and started to get worried that we were headed back to the hospital. Before calling the doctor back we decided to move Jackson back to an every 3 hour feeding schedule. It seems that this is exactly what Jackson needed. His blood sugars returned to normal. Chris and I think Jackson just wasn't ready for that every 4 hour schedule so we have decided to stick with every 3 hours until his sugars let us know he's ready for that.

Jackson is now 9 1/2 lbs and 21 1/2 inches long. He is growing and gain weight like crazy. He finally fits into his BumGenius XS diapers and they have become our favorite cloth diaper to use. Unfortunately, we only have 4. He will probably out grow these soon and we have tons of new cloth diapers (see my post here) for him to try next.

Happy Easter

2012-04-08T16:06:00.003-04:00

Happy Easter from The Pichler's

Jackson's Nursery

2012-03-30T14:23:00.001-04:00

Welcome to Jackson's Nursery

Now that we are finally settling into a good routine I wanted to show you Jackson's Nursery. We've been working on his room almost my entire pregnancy. As most pregnant Mom's will tell you, the nursery is such an important thing. I felt like it was my gift to Jackson and wanted him to feel at home in his new room. Crazy, maybe?

My goal with Jackson's room was to make it contemporary to go with the rest of our house. I'm not a huge fan of character nurseries but just fell in love with the Dwell Studio's Owls.

So when my cousin said she could make a mobile that looked like the Dwell Studio's Owls I was so excited. It turned out great and Jackson loves to watch the owls and trees spin around.

Next we needed something to decorate the walls and I had some wall decals in mind I had seen on Etsy. I think they go really well with the Dwell Owls.

I then added some elements on a shelf to pull the room together and give it a more personal touch. I found the these mercury glass owls at West Elm, the picture was cross stitched by my aunt, my Mom found his initial train in Amish Country and the "family" statue was give to us when Jackson was in NICU by my Mom's friend. Also, I put a pacifier jar on the shelf. I saw this on a design site and thought it was a perfect element for a nursery. Plus a great way to not lose pacifiers!

I love doing DIY projects so I had to make sure to include some of my handy work in Jackson's room. These pictures were featured in this post.

To handle Jackson's cloth diapers, I added a bin on the top of the dresser next to his changing pad to store the diapers in. Also, we have a pail with our Planetwise wet bag to store the dirty diapers.

Where to get it:

Crib: Babyletto Mercer Crib
Dresser: Ikea Hopen
Bedding: Dwell Studio's Owl Crib Set
Rocker: Poang Chair
Pictures: Dwell Studio's Owl Wallpaper Sample
Changing Pad Cover: Dwell Studio Changing Pad Cover
Clothes Hamper: JJ Cole Hamper
Moon Night Light: Kingerglo
Wall Decals: Planet Wall Art
Mercury Glass Owls: West Elm
Family Statue: Willow Tree

If I forgot to link anything, I would be happy to tell you where to get it.

Our 10 Favorite Things...

2012-03-24T12:00:00.000-04:00

From our first week with Jackson we have found a few things that make our life easier:

1. Summer Infant Digital Video Monitor: We have Jackson in his Pack n Play in our room but put the video camera in there with him so I'm not up every 5 seconds looking in on him. I can just stare at the monitor all night. Ha, ha!

2. Aden + Anais Swaddle Blankets: I cannot say enough good things about these blankets. Love, Love, Love them. It's been 80 degrees in Ohio this week so I don't feel bad swaddling him in these at night. I think these will make really good blankets later on for a toddler too.

3. Avent Soothies: These are Jackson's favorite so far. Both hospital's he was in used these.

4. Boon Lawn: I can fit all nine 4 oz. Dr. Brown bottles that we own plus pieces and parts on this drying rack. Love it and you can't deny it's super cool looking!

5. Chicco Playyard: We are using the newborn bassinet option on this right now for our room. Plus the changing table makes 3 am changings really easy.

6. Boppy: We use this to prop Jackson up on the couch or for those 3 am feedings when we are really tired.

7. Gerber Newborn Onesies: Jackson is so skinny that these are the only onesies that don't hang off of him.

8. Rumparooz Lil Joey's: This by far is our favorite cloth diaper right now. Again Jackson is so skinny that these have been the only diaper that don't leak out of the legs. We've tried Newborn Grovia's and Bumgenius XS also but it looks like our little guy needs some more chunk on his legs first.

9. Dr. Brown's 4 oz Wide Neck Bottles: I love these chubby little bottles. They are really easy to hang on to for Mom and Dad.

10. Baby Einstein Neptune Ocean Adventure Gym: This is a new favorite within the last two days. Jackson gets so excited when you put him on this mat. He starts kicking his legs and looking all around. It's so awesome.

Our First Week

2012-03-23T21:00:00.000-04:00

Our first week home is easily described as a blur...especially the first few days. Learning Jackson's schedule with feedings, diaper changes, medicine and blood sugar draws was a little more than we thought it would be. After the first few hours we realized we needed to write out a schedule and setup some reminders for ourselves. Our schedule we wrote out is as follows:

3 am-Feed, Diaper Change
6 am-Feed, Diaper Change
8 am-Blood Sugar Meds.
9 am-Feed, Diaper Change
12 pm-Blood Sugar Check, Feed, Diaper Change
3 pm-Blood Sugar Check, Feed, Diaper Change
4 pm-Blood Sugar Meds.
6 pm-Feed, Diaper Change
9 pm-Blood Sugar Check, Feed, Diaper Change
12 am-Blood Sugar Meds, Feed, Diaper Change

Having this written down is working really well for us. It was nice when I was so tired I couldn't think to be able to just look at the sheet of paper to know what needs done. Then when each thing is done we check it off. This was really helpful when we couldn't remember if we gave him his medicine or not.

We also had a lot of firsts this week:

Jackson and I went to the Pediatrician all by ourselves

Our first family walk (in our new Ergo Carrier)

Our first cloth diaper (Lil Joey's)

Having our little man home has been so incredibly awesome! We grow more and more in love with him every day. I love to watch Chris with him, he's such an amazing dad. We've both settled into parentdom very easily.

We're Home!!!

2012-03-19T22:12:00.000-04:00

Wahoooo!!!

Today ended up getting away from us. As soon as we got home Chris started getting sick. We think he had food poisoning but the good news is he is doing much better now.

Mom came over to help me out today. I was a little overwhelmed to say the least. Jackson is getting blood sugar tests and medicine every 8 hours, plus feeding (every 3 hours) and changing diapers. It was great to have an extra pair of hands.

So excuse my lack of updates for a little bit but we are having fun taking care of our little man!

Jackson Day 25

2012-03-18T21:57:00.000-04:00

Jackson NICU Day 25 (03.18.12)

Oh so true! It's amazing how much you can love someone who has only been in your life for 25 days.

We didn't get to the hospital until 3:30 pm. Today was my Mom's birthday so she spent the day at the hospital with Jackson. It was nice to know that he was being held all day so Chris and I could get some running around and cleaning done. We were able to pick up the house and go to the grocery store.

Jackson has had high blood sugars the last 4 readings (in the 170s) so they decided to dial back his Diozoxide by a little today.

While we were at the hospital tonight there were Tornado Warnings for about an hour. It was kinda scary knowing our house and dogs were right in the path but I felt much better knowing we were with Jackson. Once we got home the house and dogs were fine. Thank goodness!

Since his medicine was changed today, I called at 9:30 pm to check on Jackson. His blood sugar was 125 and he now weighs 7 lbs 10 oz.

Jackson Day 24

2012-03-17T23:07:00.000-04:00

Jackson NICU Day 24

Happy St. Patrick's Day!

Chris and I woke up this morning with every intention of cleaning the house that we have totally neglected the last 23 days but decided do a 2 1/2 mile walk with the dogs instead. I kept having bad dreams about Jackson last night so some fresh air and endorphins were needed more than a clean house. I was missing the boy like crazy then so we just decided to head to the hospital. On the way we stopped at Old Navy and bought some St. Patty's Day shirts for the whole family.

The cuddles made me (and Jackson) feel so much better today. It's amazing how 23 days ago made life before him seem like it never happened.

Tonight was one of our really good friends birthday parties so Chris and I went to have some green beers with her. It was nice to get out but we are so ready to see our little man again.

Since it's the weekend we didn't see any doctors today but Jackson did have really good (normal) blood sugars today. He also took two good size bottles while we were there.

Jackson Day 23

2012-03-16T20:32:00.000-04:00

Jackson NICU Day 23 (03.16.12)

Jackson had another good day today. He's getting so strong, Chris and I are so proud of him.

The Cardiology Nurse came by this morning to show me how to watch for signs of SVTs. They also gave us a stethoscope to take home to listen to his heart if we suspect he is having them.

We did have two blood sugars that were off today. But in true Jackson fashion that are now high. Chris and I told Jackson today that we are starting the think he doesn't want to come home and we're offended. His Nurse Practitioner is now checking his blood sugar every 6 hours instead of every 9 hours to keep an eye on it. If it stays up, they may reduce his Diozoxide.

Jackson and I had another fashion show today. I put him in this sleep sack that his cousin Anton gave him.

But that was after cuddle time with Mommy

Chris and I came back after he got off of work to spend some more time with Jackson. We just love watching him getting bigger. Today Jackson was following Chris as he moved side to side. He's so smart already.

Jackson Day 22

2012-03-15T19:03:00.000-04:00

Jackson NICU Day 22 (03.15.12)

Isn't he just adorable?!?!? I'm in love with this face.

Today was a great day. Jackson is continuing to improve every day. They took out his IV completely today. He is only hooked up to a heart monitor now.

Today Jackson was circumcised today at 2 pm. When I came back to the hospital with Chris, Jackson was screaming he was so upset. Poor baby :( We were really lucky that we knew his nurse today, Ana. Chris and I used to work with her before she became a nurse. She was taking such good care of Jackson and giving him extra special attention. By the time we left tonight he was sound asleep.

I did take some hats in today and just loved this one on him:

I also took in this plain yellow onesie to go with the hat. I haven't been taking in Jackson's "nice" clothes just in case they get lost at the hospital. I can't wait to get him in some of his really cute clothes we have at home.

Jackson Day 21

2012-03-14T19:58:00.000-04:00

Jackson NICU Day 21 (03.14.12)

I swear this kid can make me laugh already! He was making the funniest faces this morning. I arrived at the hospital at 9:30 am this morning and spent some time with my little love before the doctors arrived. Around 11:45 am the doctors finally made rounds. After they discussed Jackson's "stats" they asked if I had any questions. I started asking my questions I posted yesterday and they decided to call Cardiology to see if they could come over so we could all talk at once. Luckily, Cardiology was on their way to NICU anyways.

Once we were all together at Jackson's bedside, I started to feel like we were getting on the same page. First, we talked about the Propranolol (heart medicine). I didn't understand why Cardiology would offer to put him back on a med they took him off of just to get him home faster. It seemed really counter productive to me. Jackson's Neonatologist agreed with me. Cardiology today said that they would not suggest that route either. Awesome, ok, first question down and everyone agreed.

Next question was why is the extra days of monitoring needed? Cardiology said they still feel like Jackson is at risk for more SVTs. My next question was "Did they see something on the monitor this week that makes you think that?" Their answer: "No"

While I'm not really excited that Jackson will be one month old when he comes home, I can get behind this new plan now that I understand it a little bit more.

Jackson has had some more good blood sugars over night and is now back on the Similac Sensitive with no added calories. Since he isn't hooked up to an IV machine I took in a sleep sack today. He he, doesn't he look so cute? I'm gonna try some hats tomorrow.

Jackson Day 20

2012-03-13T20:24:00.000-04:00

Jackson NICU Day 20 (03.13.12)

This morning I got a call at 8:30 am from NICU letting us know that Endocrinology would be at Jackson's bedside at 3:30 pm to teach us how to take his blood sugar. I arrived at Children's this morning at 9:30 am and sat with Jackson for some cuddle time. At 11 am his doctor's made rounds. They decided that as long as his next (2pm) blood sugar was good they would take him off the Dextrose completely. They also talked about taking him down to a 22 calorie formula and if they goes good, he can go back to Similac Sensitive with no added calories. They are going to get another platelet count and if that is good, they will circumcise Jackson. All this was great news and we were riding on cloud nine.

When I came back with Christopher at 3:00 pm his IV pump was turned off. We were so excited. Chris and I were telling Jackson that we only had 3 more sleeps until he came home.

At 3:30, Pamela came over to teach us how to draw Jackson's blood and test it. Chris and I were able to practice on each other and felt really comfortable with taking it.

Jackson's nurse said Cardiology called for us while we were in the class so she was going to page them to come talk to us. Shortly after she paged them a Cardiologist came by. He proceeded to tell us that we had two options for Jackson's care going forward. We could:

1.) Put him back on Propranolol and monitor him for a few more days, then talk about going home

2.) We stay until next Wednesday to monitor his heart

I felt like he kicked us in the stomach. I asked why we were told last Friday we would need to monitor him a week off the Propranolol and now we need to monitor him until next Wednesday. His answer was "That was never what we were thinking, I'm sorry that wasn't conveyed to you"

So my options are put my kid on a drug he OBVIOUSLY doesn't need since we have had no episodes or stay for another 8 days?!?!? I'm frustrated! Very, Very frustrated! I shut down with the doctor after that answer and didn't get all my questions answered. So Chris and I made a list of questions that we need answered.

If he hasn't been monitored for even a week yet, why are we talking about adding another 5 days?
Are there studies done that say monitoring for X amount of days after medicine has been stopped is a safe amount of time?
Why are we added an additional 5 days?

I'm going armed with my questions tomorrow, hoping I can get some answers.

Jackson Day 19

2012-03-12T21:21:00.000-04:00

Jackson NICU Day 19 (03.12.12)

This morning Chris started back to work and had to be at the office at 6 am. He was up way before I was. He left this note for Jackson and I. Aren't we lucky to have him?

I arrived at Children's this morning around 9:30 am and almost as soon as I got there the Endocrinologist came by. She is in the same group as the first one we saw but I had never met her before. We talked a little bit about a plan for Jackson but she wanted to talk with his doctors first. Her plan is for us to go home on the Diozoxide and for us to test Jackson's blood sugar 3 times a day at home. About an hour later the doctors were making rounds and they agreed with the Endocrinologist. They are also going to keep Jackson off the Propranolol as long as his heart rate stays good this week. Jackson's blood sugars have been really good since Saturday. Today the last one was 88 at noon, so his Dextrose rate has been lowered to 1.5. They will keep lowering it by 0.5 every 8 hours as long as they stay above 70.

His doctors did say we will need to stay followed up with Cardiology, Endocrinology, Hemotology and Genetics once we do get home. Also, they are scheduling Chris and I for a class on sticking Jackson for his blood sugar tests. This is still something they are thinking that Jackson will grow out of which is why we are going to stay followed up with Endocrinology.

When I mentioned going home on Friday, no one would say that yes we are shooting for that date. Which I understand, they don't want us to get our hopes up but I like all this talk about follow ups once we leave.

Our big guy got a crib upgrade today....they added a mobile for him since he's starting to be a wake a little bit more.

Chris and I left the hospital today around 5:30 pm. Chris is exhausted from his first day back to work and getting up early. I was too. Once we got home there was a USPS notice on our door. We figured someone had sent Jackson some cool stuff so we headed to the post office to pick it up. The post office lady handed us an envelope from "The Girls." I knew exactly who this was. I have a group of girls I chat with online and have for years. They have been there through Infertility, Pregnancy, Jackson's Birth and now Jackson's NICU stay. Always being so supportive of us. These girls got together and sent us $400 in gas, restaurant and Amex gift cards. I've met a few of these girls but most I've never met in person. We are just in awe of these amazing girls!

Jackson Day 18

2012-03-11T20:59:00.000-04:00

Jackson NICU Day 18 (03.11.12)

I woke up with a giant sinus headache this morning and it has continued all day. I'm loving this 60 degree weather in Ohio but not the sinus headaches that come with it. Jackson has been so cute these past couple days. He's really hard to get to sleep once we get there. He just wants to be awake with us. I'm loving all the bonding time with him. I told Chris today that the first week he's home we are doing nothing but chilling on the couch. I'm just so excited for that one on one time with him at home without the cords, wires, pokes, nurses coming to check on him, etc.

Again, today, not much medically to report, there is a potential that Jackson could have to go back on the Propranolol because his heart rate has been higher since they took him off of it. It's been running 180-195 when he is active, 200-210 when he's upset. Nurse Practitioner, Mary, is not happy with those numbers. She said we would talk about that tomorrow. But I'm so happy to report that Jackson's Dextrose rate is decreased to 3 from 4 today and we still maintained in the 70's. His last blood sugar was 104 when we left at 4 pm today. He's eating really well too. The first bottle I feed him today he took 80 mL (almost 3 oz.).

While we were at the hospital today Chris and I needed a break so we headed to get some coffee and then outside to get some fresh air. A NICU family near Jackson's bed came out with their baby in the car seat. Instant tears started flowing. I was so happy for that family. We watched them load the little guy up in the van and you could see the nervousness on their face. Chris and I knew that was going to be us soon. We sat there and talked about that day and let ourselves dream for a little bit.

When Jackson was born it was so obvious that he looked like his Daddy. All of his expressions are Christopher's. It's pretty hilarious and makes me so happy. My husband is an amazing man. But I still wanted Jackson to get something from me. Well we found it shortly after we got to start holding him. Jackson has crazy long fingers and toes and so do I.

We are preparing Chris to go back to work tomorrow. It's going to be hard on him to not see Jackson all day. He's going to miss him soooo much but we knew this day was going to come. Our new schedule will be Chris working 6-230 pm. I will head down to the hospital at 9 am and come home around 12 pm. At 230 pm I'll pick Chris up from work and we'll go back to the hospital until about 6 or 7 pm. This new schedule is going to be a little crazy but hopefully we won't have to do it very long.

We hit a milestone today...Jackson lost the last of his umbilical cord. My little boy is growing up too fast already.

Jackson Day 17

2012-03-10T20:49:00.001-05:00

Jackson NICU Day 17 (03.10.12)

We spent most of the day with Jackson at Children's today. Jackson was very sleepy today and spent most of the day sleeping on me. He was so passed out in the picture above we were cracking up. I just love the cuddles with him right now. I take none of it for granted. Every moment with him is every thing I dreamed of and knew that Mommyhood would be.

There was not a lot of change medically today. Jackson's Dextrose rate was moved down from 5 to 4 today and his blood sugars were still maintaining in the 70's. Which is the best they have been in a week. We're hoping that they can continue to decrease his Dextrose and he will have stable blood sugars.

I still bawled the whole way home tonight. I'm still having a hard time knowing that I have at least 6 more nights without my family being together but after a long talk with my wonderful husband I'm feeling much better (for the minute).

Jackson Day 16

2012-03-10T07:59:00.000-05:00

Jackson NICU Day 16 (03.0912)

Today my bosses invited Chris and I to lunch with my work team. We had an amazing sushi lunch with them before heading to the hospital. So we didn't arrive at Children's until 2 pm today. On our way Nurse Mousy (who we figured out is actually a D.O, so I guess it's Doctor Mousy) called and left me a message call her back for Jackson's daily update.

When we arrived we had our nurse, Lisa, page her. Doctor Mousy arrived about 20 minutes later. We've started to come around to Doctor Mousy. She's been very compassionate to us the last two days and sat with us for another 20 minutes to explain Jackson's plan today.

The very worst news we received today is Jackson will be at Children's for at least another week. I was ready to break down as soon as she said that but the rest of the plan I'm very on board with. Doctor Mousy cannot figure out why Jackson's sugars keep crashing. His pituitary gland test (ACTH Stimulation Test) came back normal. She said that Endocrinology thinks it may or may not be the Propranolol that he is on for the SVT. Doctor Mousy spoke with Cardiology and together they decided to take Jackson off the Propranolol completely but they need to monitor him for a week before releasing him.

The plan with Jackson's glucose was to increase his Dextrose rate up to 5 and add Diazoxide 3 times a day. This should stabilize his sugar and then tomorrow they will start to decrease his Dextrose and Diazoxide. We will potentially go home on the Diazoxide if they can't wean him off of that but we can keep followed up with Jackson's pediatrician on this medicine.

Jackson was really alert today. I just love sitting there and talking to him about the future. He'll just sit and listen. The only bad thing about this was is he was awake the whole time we were there minus an hour when he fell asleep (see picture above). Today we left at 7:30 pm so our baby boy was so sleepy and fighting it so hard. I just couldn't leave until he fell asleep so I finally put him back in his crib and just rubbed his ears until he fell asleep.

Jackson is modeling some Baby Gap sweats and a Gerber kimono shirt

As upset as I am that we have to spend another week at Children's, I know he is in the best place to make sure that he has no more SVT's and that his sugars stable. I miss my boy so much. Maybe if I start a count down, he might actually come home on Friday?

Jackson Day 15

2012-03-08T20:42:00.000-05:00

Jackson NICU Day 15 (03.08.12)

Today was Infant CPR class. Chris and I are so grateful for Children's to offer this class for free to NICU parents. This class at St. Ann's was $150 for both of us to attend. Although it looks like we just had a photo shoot during class, we actually did learn a lot and feel confident that we could perform CPR if we needed to.

Today we arrived at 10 am in order to catch the doctors for rounds. They had all results of the labs that they drew last night when Jackson's blood sugar was low and the only irregular lab was his insulin. The head NP said this was really low. So they decided to order a ACTH Stimulation Test and a T4 after consulting Endocrinology. These tests required them to take some tubes of blood from Jackson and will take about a day to get the results. If these come back abnormal, she said we would need to do a brain scan. They decided that since his insulin was low they were not going to try and decrease the Dextrose today at all so we are still at 2.5. Hopefully these test results don't take too long to return so we can get a new plan together for Jackson.

Jackson's IV had to be moved to his head today

Today he weighs 6 lbs 10.2 oz. Our little "chunker" loves to eat and is consistently eating 50 mL-80 mL per feeding. He's still on Similac Sensitive with extra calories being added in by the lab.

Also, today we found out that when they tested me for Neonatal Alloimmune Thromcytopenia the lab didn't send it off correctly and they tested the wrong stuff. Wonderful, huh? But his NP today said that since his platelets are now normal we are not going to retest for that.

I'm getting a little worried about next week. Chris has to go back to work on Monday. This is going to put a little bit more stress on us since I will be going back and forth to Children's during the day by myself. We have talked about a tentative plan of me going downtown during the day for a few hours, then coming home to get Chris. We will then go back so Chris can spend some time with Jackson too. Chris talked to his boss today and he's going to be working 6-230 until Jackson gets out of the hospital so we can get downtown before traffic hits. Hopefully, we won't have to do this schedule for too long.

Jackson Day 14

2012-03-07T21:20:00.000-05:00

Jackson NICU Day 14

This is my whole world

Today I woke up with the worst attitude possible. It seems that every day is getting harder and harder to sit at the hospital. Not that spending time with Jackson is hard, I'd never leave him EVER, it's the hospital. I just want to take my kid and leave. It was a beautiful day today in Ohio and all I could think about is the fun we'd be having at home. It's really hard not to concentrate on what could have been. I hate that he's in the hospital getting poked and prodded every day.

As soon as we arrived at Children's this morning his nurse, Michelle, let us know that Jackson's blood sugars went into the 40's over the night. Chris and I were really curious what the plan was going to be now that his blood sugar was not remaining stable.

This morning we were supposed to take Infant CPR at 11 am but decided to reschedule for tomorrow so that we could be there for rounds with Nurse Mousy and the doctors. During rounds we found out that Jackson's platelets went up to 130,000 and his electrolytes were normal. So they decided to "challenge" Jackson's blood sugar today and lower the Dextrose another 0.5.

Even though this wasn't bad news, I was having a hard time dealing with knowing we are more than likely not getting out of Children's any time soon. So we decided after being there for 4 hours we would leave early today and try to be normal. Chris and I usually spend 6-8 hours at the hospital every day. We just need that time with Jackson but today for our own sanity we left early.

I took a nap when we got home and Chris took the dogs for a walk. When I woke up the bracelet Chris had ordered me for my birthday was sitting on top of my phone. It's a Tiffany Bracelet with a Mom charm on it. It made me smile right away. I've waited so long to earn that title.

At 6 pm I called Jackson's nurse to see what his 3 pm blood sugar was. It ended up dipping more after his Dextrose was turned down for about an hour. It was 42. So his NP drew the labs that the Endocrinologist ordered the other day. They want to know why his blood sugar will not stay stable. I'm hoping these labs don't take too long to get back and we can get some answers.

Today we got some fun shots of Jackson....

I took some BabyLegs to the hospital to see if they fit him yet. It looks like we have a little way to go but boy do they look cute on him.

Daddy being silly with Jackson

More milk please

Jackson Day 13

2012-03-06T20:25:00.003-05:00

Jackson NICU Day 13 (03.06.12)

Faces of Jackson

The word of the day is frustration. Jackson had excellent blood sugars over night so they lowered his Dextrose this morning. When Nurse Mousy and her team of doctors made rounds today they said they would keep lowering the Dextrose today. But after a few good blood sugars today the nurse never lowered his Dextrose so I asked her why it wasn't being lowered. She told me the orders say to lower the Dextrose only if his blood sugar is higher than 70. Not what Nurse Mousy told us and Jackson's blood sugars were in the 60s all day. We also didn't get a platelet count over night so we made sure the orders were there for tonight. During rounds we did ask when we can talk about going home and she said he had to be off the Dextrose and have good blood sugar for 24 hours.

Chris and I are trying not to get impatient but we miss our boy so much and just want him home. We are learning through this process that we need to start asking more questions. It feels like there is really no plan to get Jackson home to us. Our plan is to talk to Nurse Mousy tomorrow and figure out why the blood sugar has to be 70 before we can decrease the Dextrose. Also we want to talk about a better plan for getting him home.

We are ready for our Nurse Kim to come back. She has been our favorite nurse so far and we miss her. We were really lucky she was there Friday, Saturday and Sunday with us and did an amazing job keeping us up to date with all of Jackson's labs, etc. We've liked our other nurses but have had to ask about tests results with each of them.

So I will leave you with some positives of the day...

I got a small nap in a recliner with my boy today and it felt normal. We don't have many of these moments at the hospital, it definitely made my day.

Jackson wore another one of his onesies from home today and we capture this small grin on camera.

I got peed on (twice) during this diaper change...normalcy is so comforting to me these days.

Jackson Day 12

2012-03-05T20:39:00.002-05:00

Jackson NICU Day 12 (03.05.12)

Life of a NICU Mom - Looking up the information the doctors just told us (when the internet works)

Today was a busy day with doctors coming to see us. We arrived at Children's at 10:00 am and as soon as we sat down with Jackson the Nurse Practitioner came over to talk to us. Chris and I have been calling her "Nurse Mousy." Same Nurse who told us we would not be going home any time soon and we just haven't had a very good interaction with her since.

Nurse Mousy informed us that a Geneticist, Hematologist and Endocrinologist will be coming to see us today. She wants consults with all of them because of Jackson's low platelet count and low blood sugars. Over last night Jackson had a blood sugar of 24 which is the lowest he has ever had but after a bolus it came right back and stayed that way all day.

First to visit us was the Endocrinologist. She looked over Jackson's information and ordered a full blood panel if his sugars go as low as they did last night again. She seems to think that his low blood sugars are caused by stress. But other than that she doesn't think that we will probably see the low blood sugar again but if we do we have labs ordered so they will know why.

About an hour later, Nurse Mousy came back for rounds with her team of doctors. They have consulted the Cardiologist and decided to reduce Jackson's Propranolol by half to see if this helps his blood sugar.

Next to come over was Captain Bed Side Manner aka The Geneticist. We were lucky he had an assistant with him to "interpret." While he looked over Jackson his assistant went over mine and Chris's family medical histories. Once he was done, he told us that Jackson has no obvious genetic disorders and none of his history seems to fit into any genetic disorders. He is going to order the genetic test that Nurse Mousy wanted for DiGeorge Syndrome but doesn't see obvious symptoms of this.

The last consult we had was from the Cafeteria Lady. She was able to let us know what kind of sandwiches Jackson is going to like when he's 10. I kid, I kid. Sometimes you need a little laughter and making up names for our nurses and doctors was what kept us sane today.

The Hematologist never showed up today so we are hoping that they were just looking at Jackson's records instead of coming to see us.

We still have no idea when Jackson will be coming home. There have been no talks at all about home either. It's very frustrating to Chris and I but know that as soon as we can get the blood sugar under control we should be able to start having those conversations with Nurse Mousy.