Long Over due Update (I changed my title slightly, might change again later on)

Wow it really has been a long time since I updated. I'm going to try and give a brief synopsis on everything that has been happening. I'll go in chronilogical order, looks like the last main update was May 5th so I'll start after that.

I finally had my Baby Shower on May 7th. It was a small group of my friends but we had a good time. I can't believe I forgot to take pictures though!! The babies received a diaper bag, lot of cute outfits and necessities. We also received other items by mail... some of which were: blankets, bottle warmers, pitcher, books, and clothes.
8 weeks old (36 weeks Gestation)

May 8th - Mother's day. I got to spend the night with Jackson at the hospital. I was so scared and didn't get much sleep all night long! It was the first time I had seen him without any of his monitors.

May 9th - Jackson was circumcised. Then we got to take Jackson home!!  Addison has also started some of her feeds by bottle. :)

May 10th - Addison has been taking 20ml by bottle for the nurses. I got her to take 45ml tonight! The nurses said that the Dr's are just going to watch her PDA over the next 3-6 months and hope that it closes on it's own. So no surgery for now.  Once she takes all her feeds by bottle then she will get to come home. She will be coming home with an Apnea Monitor and on Oxygen.

Jackson is doing good at home. He took 3 oz  during one feeding for me!

May 11th - Jackson's first Ped appt. He is 6 pounds 11oz and 19 inches long! \\
May 12th - Jackson & Addison are 2 months old today!! Jackson: 19 inches long, 6 pounds 12oz. Addison: 18.7" long and 6 pounds 8 oz.  It is so hard leaving Addison at the hospital when Jackson is at home. I've missed seeing Addison 2 days since Jackson has been home because I have been extremely exhausted (to the point where I would fall asleep if I tried driving).

May 14th - Addison took 55ml by bottle and was wide awake after her feeding. She's getting to be such a big girl.

May 16th - Would have been in the 37th week gestation. Addison is 7 pounds 1 oz!! Still not taking all feeds by bottle yet.

May19th - Got the word that Addison will be coming home VERY soon!!
May 20th - OMG Addison is coming home tomorrow!!! Excited and Scared!

May 21st - Drove to the hospital at 9am... Had a meeting with the medical supply company on how to work the portable oxygen tanks and the apnea monitor. Addison's big oxygen tank was already delivered to the house. :)   After signing some paperwork we were finally able to leave the hospital with BOTH of our babies!


May 23rd - Hubbies and my 3rd wedding Anniversary. No we didn't go out and do anything

May 27th - I really love having my babies home. I can't wait till it either gets warmer outside, or the babies hold their temp better. We have to keep it really hot in the house so their temps don't dip down below 97 degrees.

May 30th - Jackson decided it would be fun to try waking every 2 hours during the night instead of every 4. Can you say exhausted?

May 31st - Well we traded both of our vehicles on a new Ford Flex. Now we can fit the whole family in one car.

June 3 - 18th - My mom came to visit. Jackson and Addison got to meet their Nana for the first time. I loved having mom here and really hate that my family lives so far away.
June 5th - The babies had someone other than mommy take their picture finally. (today was my due date)


June 12th - 3 Months old!!!!!!!!! Jackson 9 pounds. Addison 8lbs 14oz
June 17th - big sissy Brianna graduated from the 6th Grade. Congrats, mommy is so proud of you!

Mommy feeding Addison

Nana

Nana & Brianna

June 18th - I am so bummed, my mom is leaving today.


June 28th - Addison had a weight check. She is 10 pounds 11oz!!!!

July 1st -Awwww.... Jackson is starting to cry real tears. So cute and so heartbreaking at the same time
Had a scare with Addison, they wanted to do blood work to make sure all levels were normal since we were switching formula's. Well her pottassium level came back elevated so we had to go in again to get it re-tested. Thankfully the number went down. (I guess it can go up if they break down some of the red blood cells).

July 4th - the Babies first 4th of July! Happy Birthday America

July 5th - The babies are 1 month adjusted and almost 4 months actual age.
Addison had a follow up appointment with her pulmonologist today. He took her off the oxygen and the apnea monitor!!!! She is finally wire and tube free!!!

July 6th - Just one day off the oxygen and Addison is already acting like a different baby. She acts like she wants to get up and run around the house! She is much more alert and has been awake a lot more today too. :)

July 7th - Wow Jackson slept 6-7 hours in a row last night.

July 12th - The babies are 4 months old (Actual)!!!!!!!!!!!!!!! Jackson has started to coo the last week. Both babies are smiling a lot each day!! They seemed to be enthralled with the ceiling fans too!!!

July 16th - I took some pictures off J & A today for 6 weeks adjusted/ 18 weeks actual since I didn't get a chance to when they were a month old. Addison is cooing now too. 

July 18th 4 Month well baby visit  - (6wk adj) stats: Jackson: 11 lbs 11 oz & Addison: 11 lbs 7 oz. Both are 22" long. Both in avg range for their adjusted age which is good. Developmentally: Jackson acts like a 3 month old (so slightly advanced for his adjusted age) and Addison acs like a 4-6 weeker (her adjusted age is 6 weeks so I'm happy). I knew they wouldn't be acting like 4 month old's yet.

July 20 - Took the whole family to the zoo with the Parenting NICU group from the hospital. I wouldn't let anyone touch the babies of course. They really didn't care for having to drink a fairly cool bottle. We had a good time. Course the babies won't remember any of it. 
PM:  Jackson is sounding hoarse. Weird. Time to call the Dr in the morning


July 21st - Took Jackson in to the Dr. He definitely has Thrush. She thinks his hoarseness is from the thrush. Course other possibilities are: Reflux or a virus starting.


July 23rd - Finally updating blog. LOL   Jackson is still on meds and it doesn't seem to have changed at all. He's not eating the 5oz he normally does per feeding either. He's down to 3 1/2 - 4 oz. At least he loves taking the medication (since we have to give it 4 times a day!!)

I know I haven't been posting....

But there has been a lot going on.... Both Babies are home!!!!!!

I'll post more later and give more info on what has been happening lately. I just don't have time at the moment.

today

I finally got to talk to a neonatologist today. He actually grabbed the phone before the nurse could. Addison had an echo the other day, and there has been no change since the prior one a few weeks ago. This Dr would have liked to have seen some change. So he decided he wanted to try to give her a med that may help close her PDA. He thinks the PDA is what is causing her desat issues since when the PDA is open it prevents all the blood from going to the lungs so some of the de-oxygenated blood is going back to the Left side of the heart (when normally only oxygenated blood does). That's why she is desatting because not all the blood is oxygenated at 100%. It's possible the med won't work due to her age, but other risks are low so it's worth a shot (I'm glad someone is finally trying something... I had asked about this med a few weeks ago!!). Course they have to take her off feeds while she is on the meds (through noon on Sunday). It can cause the vessels in the gut to constrict as well causing her issues while eating. She is on an IV again so she can get her meds and nutrients.




I'm hoping this is the cause and the meds will fix everything. If it does work, then I'm curious to see if her feeding issue (she desats a lot while eating) goes away. They stopped her caffeine 2 days ago as well so I'm hoping her reflux will get better (since caffeine makes reflux act up.)




I love it when she is alert. I can't help but smile when her eyes are bright and she smiles at me. It makes my heart swell!!




Jackson is doing great on demand feeding. He wakes up every 3 1/2 - 4 hours... he is drinking straight breastmilk (no added protein anymore or Human growth hormone). He will drink anywhere from 60 - 75ml (which is 2 - 2 1/2 oz) every feeding. He is a very quiet baby most of the time when he is waking up, I hope I hear him during the middle of the night!! Course today he did make a fairly large noise when we weren't quite ready to feed him yet. That was the loudest I have ever heard him really. LOL He has this really cute little grin too... It's so hard to catch on camera





He hasn't had a brady since 5/3... so that puts him on target to come home on Sunday. He had his 3rd brain ultrasound this week and it's normal and they don't consider him at risk for brain bleeds anymore. I think his circumcision procedure is set for Saturday.




Both of them are 6 pounds 2 oz now!!! They should also be getting their follow up eye appt within the week...

7 weeks old

Well my babies are 7 weeks old today!! I can't believe it's been 7 weeks already since they were born on 27w6d. (they'll be 35weeks gestation Sunday)

Jackson is 5 pounds 13oz and Addison is 5 pounds 10oz. They are both 17 - 17 1/4 inches long.

Addison is still on the canula...I can't wait for the day that she doesn't need that anymore. She tends to go 48-72 hours without a BM... not sure what that is about. She sucks on her binky occasionally and will cue every once in a awhile but not all the time, so we haven't tried breast feeding or bottle yet. She did pass her hearing test today!!

Jackson passed his hearing test a week ago. He is taking at least 50% of his feeds by bottle/breast. So the Nurse Practitioner today said he will start going on Demand feeding this week. I fed him by breast today (he took 24 of his 50ml by breast) and then he was exhausted so we tube fed him the rest. He tends to fall asleep faster when BF then he does when he gets a bottle. The NP said that as soon as he goes to demand feeding he will likely go home in a weeks time. So he could be home in a week!! Assuming he doesnt' brady of course this week (he had a brady this evening when he refluxed.)

Sometimes I feel guilty holding one baby more than the other. Some days it happens unintentionally (depending on when I get to the hospital and how long I stay there). Their care is an hour apart. Addison is on 12 - 3- 6- 9 schedule and Jackson is on 1 -4 -7 -10 schedule. So if I get there at 3pm then I do Addison's care, hold her until close to 4 and then start Jackson's care and hold him for about an hour (sometimes longer). So unless I skip Jackson's care, then I can generally only hold Addison for a little less than an hour at a time. Sometimes I will only hold Jackson the hour and then spend the hour of free time pumping or taking pictures of both. 

Course then there is my 12 year old... she feels neglected sometimes with all the time I have to spend at the hospital and all the stuff the babies are getting.

Good Day

Today was a good day. I went to see the babies by myself. I got there in time for Addison's care. We decided to go ahead and weigh her and measure her. Course I had her ready but there wasn't a scale available yet so I did Kanga care. She and I both enjoyed it. She weighed 2340 grams today, was 44 1/4 cm long ( just over 17")... my girl is growing!!
Then it was Jackson's turn, I kind of sort of did Kanga... while we were doing Kanga we practiced breastfeeding. At first he kind of just played. Then we used a nipple shield and he just went to town!!! He took close to 30ml!!!!!!!!!! By then he was tired so we dressed him and let him sleep. Poor little guy would have slept through his next feeding if they wouldn't have tried to wake him. He was too tired to do bottle or breast again so we decided to tube feed him again. I'm very proud of my little boy!!! He weighed 2415 grams!!!! They hadn't measured him yet so I will have to call in and find out.
Then after pumping it was time for Addison's care again. I got to hold her again (not kanga) and we were belly to belly basically. She was at 23% o2 pretty much all day... but she did great. Not many desats at all.
They are so cute!

Happy Easter

My babies had their first Easter today. Course they really don't know they had their first Easter. I took a picture of them with their bunny.

Addison also hit 5 pounds as of today!!! (Course she hasn't pooped in 2 days so part of it could be that). Jackson is 5 lbs 2 oz.

Jackson had his hearing test today. He passed!  They also discontinued his caffeine (he has been on it since he was born). He has taken 2 bottles since his overnight feedings (and it was the full 43ml he is supposed to eat). We tried BF again today, he got tired quickly of course so we fed him through his feeding tube for the rest.  He had 2 brady's while I was there... they were both related to reflux. Oh and it's been about a week at least since they have heard his murmur.... fingers crossed that means his PDA is closed!

Addison is eating 40ml these days. Here is still by ng tube. Her desats seem to be a little better than what they were. She's still having them, but she seems to pull her self out most of the time. There was only twice I think while I was there that they had to up her o2 or stimulate her. As for her hearing test, they didn't do it today. They said "closer to the time that she'll come home". So that really sounds like Jackson might come home before she will.

I took the car seats in today for inspection. That makes coming home seem so much more real.

6 Weeks old!

Jackson and Addison are 6 weeks old today! 

They had a big day. They had their First Bath today!! Addison HATED it. She screamed her little head off! Jackson was upset about his but he was more mellow and didn't scream, just fussed a bit. I wish I could have taken pictures during the bath but it was just the nurse and I so it wasn't a possibility. 

Pictures after the bath....

Jackson also drank from a bottle for the first time today! (We've been practicing BF the last couple of days). He actually drank 23ml!!!!!!!!!!!!!!  

As for their weights... Jackson hit 5 pounds today and Addison hit 4 pounds 13 oz!! They are about 17" long. My babies are growing!!