I'm sorry..but I bring pictures

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I can't believe it has really been that long since I've blogged. Really, July? Where do I start? Well, I guess July!?

Fall Family Picture

Lets start with the most important: Jackson

Jackson is 24 pounds and 31 inches long and 8 months old. He has 9 teeth, all 8 in front and 1 molar poking through. Jackson has now moved from his baby carrier seat to a big boy car seat but still rear facing. We are still cloth diapering and loving it. We also started making our own baby food for him and has not refused any food we have given him.

Jackson's blood sugar has been doing great. He eats every 4 hours during the day and is still taking Diazoxide every 8 hours. At night he is sleeping 11 hours and his blood sugar is maintaining very well. December 10, Jackson's Endocrinology doctor has scheduled for Jackson to be checked into Children's Hospital and "challenge" his blood sugar. They will take him off all meds and not let him eat for 12 hours. During this time, they will check his blood sugar every hour.

Jackson has had a few overnight heart monitors and Cardiologist appointments. They have all come out perfect.

His Genetics doctor thinks that Jackson's head is just a little too big and growing too fast. That combined with his blood sugar and SVTs, he thinks we could be missing a genetic disorder somewhere. So he requested that we get an MRI of Jackson's head. This requires Jackson to be fully sedated. Unfortunately due to timing, this is scheduled for the same week as his blood sugar challenge test. This is going to be hard week on our little guy.

 Chris and I are going great! We've been making being healthy a real priority for the first time in our life's. While we are both excited to have lost a lot of weight, it's really great to see how working out really does make you feel good.

I'll follow up with a "favorites" post since those have changed so much also.

5 Months Old

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This month has been craazy! Jackson has had the Croup, a Double Ear Infection, Bronchiolitis and got 2 teeth. Overall that equaled not much sleep for Mom and Dad. I can't believe how big he has gotten.

Jackson is now sucking his thumb, grabbing his feet, laughing at everything and making lots of baby sounds. I swear one more morning he's just going to talk to me.

I'm loving watching his little personality grow. You can see him observing everything and learning. It's so awesome!

4 Months Old

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Jackson is 14.5 pounds now! He is getting so big and actually getting a little chunck on him. Jackson's favorite thing to do right now is suck on his hand or fingers. He thinks his hands are amazing..lol.

We finally got the results for his 24 hour heart monitor and he had no SVT's while on the monitor. We followup with the doctor next week to discuss what the plan is from here. But I suspect that we will probably do another heart monitor in the coming months to double check everything. Also, we followed up with the Endocrinologist this month and they tested Jackson for the genetic markers for Hyperinsulinism. We're not sure weather to be happy or not but he does not have the markers for that. So this leaves us back at square one with not knowing why Jackson has low blood sugar. The plan for his with Endocrinology is still to check him into Children's in December, take him off the medicine and see how he does!?!

Jackson's schedule has changed to sleeping 5 hours at night and his sugars have been tolerating that really well. We feed Jackson at 9 pm, then at 12 am and he does not eat again until 5 am. We are loving the extra sleep we are getting!

3 Months Old

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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.



2 Months Old

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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...

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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.

Our 10 Favorite Things...

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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

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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!!!

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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).