Day 83

Day 83

Jackson day 83: 2206 grams or 4 lbs 13 oz. I thought the blood yesterday might have been the magic trick and he would just wake up and eat all of his bottles today no problem. Turns out there is no magic trick. He's eaten about half of his milk today. He fell asleep during his last bottle and as soon as they started his feeding pump he woke up and gave me sly little smiles. I think he likes teasing me a little bit. Probably still pay back from the binky/rattle swap fiasco. FOJSP! 

Day 82

Day 82

Jackson day 82: 2166 grams or 4 lbs 12 oz. His eating has been dwindling a little bit day by day. He is eating a little less than half now. When they checked his hematocrit this morning he was down to 28 again. This has likely led to his low energy and less interest in eating. Dr. Nold gave him 40 ml of blood today. Hopefully this will give him the energy he needs to start eating better again. He still isn't making his own blood yet, but this is something we can monitor with his pediatrician when he goes home. FOJSP!

 

Day 81

Day 81

Jack day 81: 2149 grams or 4 lbs 12 oz. No need to worry about this little big  guy's weight gain, he gained 3 oz last night. He's eating pretty good today, more than half by himself. He has had some spit up again with being back on the fortifier, so we will just watch it close and decide if it's worth it to continue. Jax is full of personality, we just love our 'chats' with this little guy. He has lots to tell us! FOJSP! 

Day 80

Day 80

Jax day 80: 2074 grams or 4 lbs 9 oz. He lost 2 ounces yesterday so they are going to put him back on 22 calorie fortified breast milk. His weight fluctuated during the week but overall he hasn't gained any weight since they stopped the fortified milk last week. Hopefully the reflux doesn't come back, which is the reason they stopped the fortified milk in the first place. He's doing great otherwise. Continuing to eat a little more than half of all feedings. Dad is sure glad to be home, can't get enough of this little bubba! FOJSP! 

Day 79

Day 79

Jackson Day 79: 2122 grams or 4 lbs 10 oz. Jackson is still doing great. Not eating quite as much as the day before bit he's still eating more than half of his milk himself. He's continuing to so great on weaning the oxygen, his flow is down to .25 liters per minute. FOJSP! 

Week 11

Week 11

11 weeks! These updates have so been so amazing for us to document Jackson's Journey. Often I am able to remember/find when changes happened before the nurses and doctor can find it in his chart, which is about a foot thick by the way. For example, Day 25 was the first time we held him. Day 34 is when he came off the ventilator for the last time. Day 49 is when he had his first bottle. Thank you so much for following along. All of your comments, thoughts and prayers have meant so much to us. It has been a long road but it has given us strength to know we had all of our friends and family behind us. So THANK YOU from the bottom of our hearts. 

In contrast to my impatient whine about being "patient" last week I thought I would share more pictures of Jackson. Because really, he's way cuter than anything I can say!  The nurses have told us he has attitude and the most 'vocal' expressions from the beginning. Here are a few of my favorites:

His 'Are you gonna give me my bottle or take another thousand pictures mom' face 

His 'You waited too long to give me the bottle so now I'm going to pucker my lips up tighter than your post-pregnancy jeans and you are never getting that bottle anywhere near my mouth' stubborn face

His 'I'm just chillin' ' face 

His 'no more pictures please' face (he pulls this one all the time)

His 'why did you stop nursing to take a picture' angry breastfeeding face

His 'I can be a happy baby too' face

His deep in thought face

His angelic face

His burp face

His 'is this hat as fabulous as me' face

His 'Mommy stole my binky and gave me this dumb rattle instead' face

His 'I love kisses' face

Day 77

Jackson day 78: 2136 grams or 4 lbs 11 oz. 11 weeks old! He's doing great. They've turned his oxygen flow down to .3 liters per minute. In the last 24 hours he's eaten 6 out of 8 feedings. He's made huge progress with eating. So much so that the nurse told me to go to the CPR class tonight because he may be out of the NICU by the time they offer it next week! Fingers crossed. FOJSP! 

Day 77

Day 77

Jackson day 77: 2116 grams or 4 lbs 10 oz. Jackson lost an ounce. Not a huge deal as long as it doesn't continue. Dr. Berger stopped the lasix because he doesn't think extra fluid is the problem. The steroid inhaler seems to be really helping. Yesterday Jackson breastfed 2 of his feedings and out of the other 6 feedings he ate 120 cc from the bottle and 120 cc via the feeding tube. So overall he ate more than half of his milk by himself yesterday. So much better than I had realized. It's so nice when the nurses remind me of how good he's doing. Sometimes I get lost in only looking at one bottle at a time. He was very alert this afternoon and we took sometime to play with his rattle. I think he was more disappointed I took his binky away for the picture though. He's getting to be such a big boy. FOJSP! 

Day 76

Day 76

Jackson day 76: 2145 grams or 4 lbs 11 oz. The steroid inhaler seems to be helping Jackson. He ate 2 whole bottles last night and so far 1 whole bottle today. His breathing seems to be a little easier and this has brought his resting heart rate down from 170's to 150's. So it seems he isn't working as hard. Hopefully things continue looking up for Jackson. FOJSP! 

Day 75

Day 75

Jackson day 75: 2133 grams or 4 lbs 11 oz. Jackson ate 15 cc this morning and 20 cc this afternoon. But by the end he is just worn out and breathing hard. Dr. Nold wants to try a steroid inhaler, budesonide, twice a day to see if this helps reduce any inflammation and allow him to breathe easier and hopefully eat better. This is a treatment he could go home on if it does help. She is also trying lasix again to see if he has any extra fluid that is making it more difficult to breathe. Just like us, they really want to see him  start eating better more consistently. She is trying him at 100% oxygen with a reduced flow again. I think they want to see him go home as much as we do. ☺️ FOJSP! 

Day 74

Day 74

Jackson Day 74: 2136 grams or 4 lbs 11 oz. Happy Easter! Jax just finished his first bottle for Dad! Couldn't be happier, it's been 6 days since he last finished the whole bottle. 😘 FOJSP! 

Day 73

Day 73

Jax day 73: 2108 grams or 4 lbs 10 oz. He lost 9 grams, but that's not a significant amount. Yesterday was his first full day off of the fortified milk. They took him off the fortifier to see if he liked eating any better. It didn't seem to make much of a difference yet, he wasn't very interested in eating this afternoon. He nurses great so hopefully he'll get this bottle figured out soon. FOJSP! 

Day 72

Day 72

Jax Day 72: 2117 grams or 4 lbs 10 oz. Dad's home! Jax has changed so much in 2 weeks! Even his hair is longer! It's unbelievable. It was so great to hold him again. He ate half his bottle for me this afternoon. Afterwards he was all smiles and had lots to tell Dad about with his little squeaks. He had his last eye exam for 6 months today. They have been checking every 2 weeks for signs of ROP. But today his eyes have matured enough and he is not showing any signs of ROP, so the have cleared him for 6 months. This is great news! So happy to be home. FOJSP!!! 

10 Weeks Old

10 Weeks Old

This last week seemed to have flown by! It was so exciting with Jackson starting to eat his whole bottle. It started to feel like he'd be coming home any day. But I think we got ahead of ourselves a little bit and it's just going to make the next few weeks feel longer and all the more frustrating. Everybody keeps saying 'be patient'. We've been practicing patience for the last 10 weeks. Patience while we waited for his PDA to close. Patience while we waited for him to get over pneumonia. Patience while we waited for him to breathe. Patience while we waited for him to start tolerating food via just the NG tube. We've been patient. But this is a whole new kind of patience when you're just waiting on one last thing before he can come home. When it takes all your strength not to plead with your baby 'Eat! Please just eat! Eat and then we can go home! Doesn't that sound great? Please. Just. Eat!' So instead we'll continue to be patient...

Day 71

Jackson Day 71: 2100 grams or 4 lbs 10 oz. Ten weeks old today! He's doing a little better with eating today. He finished a bottle for the nurse last night and ate a little more than half his bottle this morning. He even gave me some smiles this afternoon. He's having a great day. FOJSP! 

Day 70

Day 70

Jackson Day 70: 2061 grams or 4 lbs 8 oz. He's doubled his birth weight. Jackson still didn't feel like eating last night so they just fed him through his NG tube all night and didn't make him try the bottle. They thought he was having a tougher time breathing so they gave him another albuterol treatment. They also thought it might have been reflux so they sat him up in a swing to sleep (I can't believe they didn't take a picture for me!). It seemed to work because he was very bright eyed and happy this morning and nursed great. But he's gotten more tired as the day has worn on and he has still not been very interested in the bottle. He ate 25 cc the first bottle and 10 cc the second. Dr. Berger didn't feel he was ready for the at home oxygen test, he needs the flow support still, so they've switched him back to 30% oxygen and .5 liter flow. He had his last 2 month vaccine shot today. Hopefully he'll rest easy tonight and be ready to attack the bottle again tomorrow! FOJSP!