Day 37

Day 37

Jackson Day 37: 1130 grams or 2 lbs 8 oz.  3 days off the ventilator! He is doing so great with it. All of his blood gas tests have been excellent and he is hardly having apnea bradycardia at all, he went 6 hours yesterday without having any before having a little one. And he went another 18 hours before having a little one this morning.  But it is a huge improvement from the first day when it was happening several times per feeding. Now it seems more correlated with being overwhelmed. And he'll just have one then recover and be fine. Dr. Simmons is impressed with how well he is doing and will start to wean the steroids more as his stridor is also improving. He is still a little squeaky but getting better everyday he is off the vent. He has done great with the additional calories added to the breast milk, 2 additional calories per ounce for a total of 130 calories per day! They will add another 2 calories per ounce tomorrow if he continues to tolerate it. Jackson still loves to suck on his binky to calm himself down, especially while he's eating. He's doing great and we pray the good days continue. Love you all! FOJSP!!! 

Week 5

Week 5

Crazy how much has changed in a week. Jackson is now taking only breast milk, no more TPN, and has gained 5 ounces. He is doing so well with eating, and has stopped spitting up almost completely. He has nothing 'sticking' him any more, no more central lines or IVs. And he is off the ventilator. He has been off for 64 hours as I post this. Previously his longest stretch was 30 hours. The doctors and nurses keep warning us not to get our hopes up do that we aren't crushed if he has to go back on the ventilator. We are tring but we are so proud of him. He is so tough and fighting so hard to breathe on his own. And lastly we are getting to hold him so much more. In the first month we got to hold him a total of 3 times. Now we get to hold him twice a day. Our little guy has come so far in 5 weeks. 

Day 36

Jax day 36. 1100 grams or 2 lbs 7oz. Still off of the vent. Stridor is still minimal but present. Blood gas numbers are good. Dr Simmons is a little concerned about his apnea bradycardia so he is going to give him a little more caffeine and increase the oxygen pressure a little. We are using a ram air cannula so he is hooked to a ventilator but it is not hooked up to an intubation tube. Cannula is just a little bigger and the hoses are stiffer than a normal cannula. His weight has not gone up much and charted he is below the 3rd percentile for his gestation age so they are giving him additional supplements in his milk to help him start to gain weight. They held off until today because he may have an aversion to the supplements and he needed all his energy focused on breathing. He is doing very well overall. FOJSP!

Day 35

Day 35

Jax day 35.1110 grams or 2lbs 7 oz.  Still off the vent! Blood gasses were great this morning. Still having apnea bradycardia but primarily during feeding only. He has stridor due to the swelling in his throat causing him to squeak when he breathes. The stridor makes him labor a little more for air and was the reason he had to go back on the vent last time. Dr Simmons is decreasing the steroid dose and frequency. He is steering away from using nebulized epinephrine as it can result in worse stridor effects after it wears off. He is still eating well and he will be staying on current amounts of milk. They will begin to add calories to his food as soon as he stabilizes off of the vent. Overall today is a good day. FOJSP! 

Day 34

Day 34

Day 34: 1130 grams or 2 lbs 8 oz. Tube is out! For the fourth and, fingers crossed, final time. This morning he had a very large air leak around his tube indicating the swelling in his throat had gone down and it was time to pull the tube. Dr. Nold wants to give him the best chance possible at this. So she has started him on the CPAP (continuous positive air pressure) RAM cannula. She is also giving him 4 more doses of the steroid dexamethasone over the next 24 hours to keep the swelling down. They have also given him 2 racemic epinephrine breathing treatments to help open his airway. They want to see him off the ventilator as much as we do and have done everything they can to make this time a success.

Both blood gas tests were excellent today! A good sign he is doing well off the ventilator. The last two times he was off the ventilator his CO2 was bmvery high. This time he is having apnea bradycardia again but only while eating. It is a very scary thing to watch, and makes for a very tense day staring at his monitors, jumping up to wake him up before it becomes an issue. They think this is because the feeding tube keeps his stomach sphincter open allowing milk to flow back up into the esophagus. There is a large vagus nerve that runs along there and as milk flows back up it stimulates the nerve which causes a reduced heart rate and leads to apnea. They have propped him up during his feedings and that seems to be helping. Hunter held him upright for an hour during his feeding tonight and Jackson loved it.  Everytime his heart rate started to dip, Hunter was able to pat his bum to wake him up before it became an issue. We wish we could hold him for every feeding, but it is just too much stimulation for the little guy right now. We will see. Jackson is doing good, he's a tough little guy. The roid rage is much less today, and he is starting to be comforted by his pacifier and being swaddled. It is so wonderful to see him enjoying 'normal' baby comforts, even if the binky takes up half his face and when swaddled he is smaller than a Cafe Rio burrito! Lots of prayers things continue to go well and the reflux improves. FOJSP! 

Enjoying his binky

A very vigilant Dad

Good night cuddles with Dad

Jackson loves his Dad

Mom hanging out next to them reading books to Jackson, our favorite right now is 'I love you, stinky face'

Day 33

Day 33

Day 33: 1110 grams or 2 lbs 7 oz. No weight gain today. He is still doing great with eating. He is up to 17 cc, and a full feeding is 20 cc. He is already off the TPN and just getting D10 (sugar water) for the calories. Tomorrow he will be at full feeding and will not get the D10 anymore. At this point they will add calories to the breast milk to make sure he's getting enough. We are enjoying our twice a day snuggle time with Jackson and we can tell he loves it too. We bought him some books and take turns reading to him while holding him. Soooo much better than the little bit of contact we got during diaper changes. Although we still look forward to those every 3 hours too. The steroids are giving Jackson serious roid rage. He gets ahold of that tube and his knuckles turn white, he's gripping it so hard. He wants it out, and he wants it out now! They've given him Ativan to help him calm down until he's done with the steroids. The steroids have also given him a very round face, they call it moon face, but that will go away once he stops them. He will have his last dose of steroids tonight. Tomorrow they will try the tube out again. We are praying he is able to stay off the ventilator this time.  FOJSP!!! 

Sleeping soundly after a roid rage freak out

Poor little 'moon face' right before a full blown tantrum

Day 32

Day 32

Day 32: 1110 grams or 2 lbs 7 oz. Still growing! Jackson is breathing much easier back on the vent and his blood gas tests have been excellent. They had to move his IV from his arm to his scalp last night. If was definitely a bit jarring for mom to see today but it does not hurt him and they last longer so it is better. The steroids seem to be working and hopefully Tuesday or Wednesday we will be able to try him off the vent again (hopefully for good this time!). Our nurse said the steroids can cause chubbier cheeks, and we all agreed he had the cutest chubby cheeks today. Jackson is getting bigger and stronger everyday, so the doctor prescribed Jackson and mom/dad snuggle time. We will get to hold him once per shift now! This is huge for our little and we are so happy we will get more bonding time with him. It's hard to feel like a parent through the little isolette port holes sometimes. Today was a much better day than yesterday. FOJSP! 

Day 31

Day 31

Jax Day 31: 1060 grams or 2lbs 5oz. We had to intubate Jax again at about 2:45. His blood gas numbers were not very good at 2pm. His breathing effort is good but he does have quite a bit of restriction. Doctor feels that his throat is swelled from the intubation  and is restricting his airway. Before intubating again he would squeak when breathing and he was straining very much for each breath. He may also have a little fluid on his lungs as well. They gave him a nubulized albuterol treatment to help open up his lungs. He is so little that the just blow the vapor over his mouth and nose. He is also getting lasix to help pee off excess fluid that may be building up in and around his lungs. They changed him over to a ram air cannula and a CPAP ventilator before intubating but it did not help. He is also getting steroids for three days to help mature his lungs and decrease swelling. He does not show signs of infection and he is receiving his last batch of antibiotics now. It is hard to see him go back on the vent but he was struggling too much without it. I can see the fighter in him and he will come off of that damn vent soon. FOJSP.

In the morning before they intubated

Tried his first binky today, he was not having it. He did not want anything in his mouth after getting that tube out. Unfortunately he ended up with the tube back in.