Day 20

Day 20

Day 20: 930 grams or 2lbs 1oz. Rough night, rough day. No cuddles for mom and dad today. We had to intubate Jax last night. He was having a lot of A's and B's to the point they called them death spells so they needed to intubate to help him breathe because his brain is just not mature enough to breathe consistently for him. The intubation tube plugged off with lung secretions (could not suction) that caused him to not get air so they had to pull the tube and replace it. The tube would not set properly due to inflamation so they had to run another smaller tube. Due to the plugging his right lung collapsed and increasing the need for oxygen (high 90's %), high rate of 50 bpm, and a higher peep. His oxygen saturation level would not come over the low 80's even with this intervention. Dr. Nold indicated that he is in Persistent Pulmonary Hypertension of the Newborn (PPHN).  This causes the blood vessels in the lungs to revert to a recessed size (she compared it to blood flowing through a 1/2 inch hose then constricting it to a 1/4" hose). This was likely triggered by the collapsed lung resulting in his body panicking and reverting to the constricted vessel size. This is an internal function in babies that are in the womb, the vessels of the lungs are constricted forcing blood to flow through the PDA instead of the lungs. The doctor opted to change ventilators and now he is on an oscillator that gives him up to 900 oscillations per min. It removes the need for him to breathe by "vibrating" the oxygen in and out of his lungs. It makes him vibrate from his shoulders to his waist. While he is on this he does not breathe on his own at all. No chest rise at all but his stats are much better. He started at 100% O2 and is now down to 55% O2. If the oscillator does not snap him out of this then he will be transported to another hospital to have nitric oxide (different than nitrous oxide) treatments. His right lung was showing signs that it was inflating on the last x-ray. We are about to take the fifth x-ray today at 1pm we are looking for open clear lungs. They gave him morphine to relax him. His white blood cell count is very high 60k but could be caused by many factors other than infection but he may get a few doses of antibiotics as a precaution after further review. They actively stopped feedings to help him focus on breathing only. He is tough. Everyone in the NICU is very supportive and attentive to Jackson's needs and they are doing a great job. FOJSP!

Day 19

Day 19

Jax day 19: 960 grams or 2 lbs 2 oz. They think some of this weight loss could be due to not having the weight from his ventilator tube anymore. He is continuing to take the milk well. They increased his feeding to 3 cc (2.5 cc is a half teaspoon) every 3 hours, and they are going to increase that by 1 cc every 12 hours if he continues to process it well. The vent is still out! He is still having apnea and bradycardia episodes. They make sitting by his bedside much more nerve wracking. We are getting our squats in jumping up and down every time his alarm dings so we can rub his chest to wake him up. He likes to play games with us, and half the time as soon as we stand up he starts breathing again. It's just fine with us, we'll jump up and down for him all day long. I've saved the best bit of news for last...if he continues to do well through the night, Hunter and I will get to hold him tomorrow! Fingers crossed and lots of prayers, we have been looking forward to this moment for a long time. FOJSP! 

Day 18

Day 18

Jax day 18: 1020 grams or 2lbs 4oz (back to birth weight). The vent is out! Jax is no longer intubated! He is still on a ventilator but he is getting the air via a nasal cannula. He is getting some help from the ventilator but he is breathing on his own. It is up and down as far as oxygen saturation goes. When he relaxes and just breathes deep, life is good. Dr Nold noted that he will be angrier than normal and will have a little roid rage moments and she was right. I expect any moment for him to turn green, rip his diaper off Hulk style, and throw it at me! He seems to be responding well overall and the first set of blood gasses pulled an hour after show that he is expelling CO2 well. He is now going to showing us "episodes" that the nurses call the A's and B's (Apnea and Bradycardia) where he just forgets to breath then decreases oxygen levels that then slows the heart rate (below 80 bpm). The first time it happened it scared the crap out of me. It is very common and generally he will catch himself but can also be corrected by a small stimulation of touch or rubbing his back. He will likely do this until a couple weeks before we leave the NICU. Last set of steroids are today and they gave him a boost of caffeine to help him transition. Again he is hopped up on caffeine and roids... Yeoswa when he gets mad! He started accepting milk today, so they upped the dose to 2ccs every 3 hours. This is a huge day for Jax. Good job buddy! FOJSP!!!

Day 17

Day 17

Jax day 17: 980 grams or 2lbs 3oz. Today is day two of the steroids. They seem to really be helping. In addition to the the steroids he is getting caffeine as well. He is being weaned off of the vent right now and there is a chance they will try to pull it tomorrow if he continues to improve. His hematocrit is 27 so he is getting two blood transfusions tonight 20ccs total. There are no bowels sounds but x-rays show some gas present so we gave him 1cc of milk to see if we can get him to accept food. He is doing great. The weaning is pissing him off a little bit but he is rebounding to the decreased rates well. FOJSP!

We have started to decorate Jackson's "home" more. Grammy and Grandpa Kuwitzky made Jackson this adorable sign. 

Thanks to my Dad's friend, the wonderful people at United Methodist Church in Virginia made Jackson this beautiful prayer quilt. It has all these strings on it, and every time someone said a prayer for Jackson at their church they tied a knot. It is so comforting to see all the prayers for our sweet little boy. 

Jackson is one loved little boy. 

Two Weeks Down

Happy two weeks Jackson! 

It's hard to believe it's been two weeks already. Jackson gets stronger everyday and has already overcome so many hurdles. Heart murmur is under control; bilirubin is down and lights are off for now; brain bleed has improved on right and remained stable on the left side; had two arterial lines put in; had PICC line put in; received 2 blood transfusions; gained 5 oz since initial drop from birth weight; another week older and getting cuter everyday. 

All smiles in the morning 

Lights are off, so now Dad has to sneak peeks under the blanket 

Loves to stretch out and show off his tall he is

Shhh...I'm sleeping

A little mom and dad time

His next biggest hurdle is coming off the ventilator. When he was first born they thought he would be off in a day or two. When I asked how long before I could hold him, they didn't want to give me a date. They reluctantly, after some prying, told me likely a week. I see why they were reluctant. His two week birthday is a bit of a painful reminder I have not been able to hold him yet. As other new babies have come into the NICU it has been painful watching their mothers get to hold them right away. But as the nurses remind us all the time, our day will come too. All Jackson needs is time. And he has done that. Another week closer. 

Day 16

Jax day 16: 1000 grams or 2lbs 3oz. They are going to start steroids today. It will be two doses of dexamethasone a day for three days. Then they will look at weaning him off of the vent depending on how he is doing. Still no bowel sounds or signs of bowels functioning. His bilirubin has gone up so they will likely start lights again tomorrow. The doctor cannot hear a heart murmur at all anymore. They are going to check blood hematocrit levels and likely do another transfusion tomorrow. His blood gas numbers at noon showed high CO2 and low acidity so they increased his vent rate to counteract. Hopefully this will get better soon. He was all smiles again this morning as mom sung to him. He is definitely a morning baby, I don't know where he gets it... FOJSP! 

Day 15

Day 15

Jax day 15: 970 grams or 2lbs 2 oz. The head ultrasound shows no sign of a bleed on the right side. The left is still a grade two bleed but has not worsened. The grade two bleed means that it did bleed initially into the left ventricle but it did not bleed enough to intrude into the  brain tissue or cause swelling of the ventricle. This blood should start to absorb soon. They are comfortable waiting two weeks for the next head ultrasound. His respiratory blood gas numbers are good and they are going to push him a little today to wean the ventilator. They are going to lower the continuous pressure on the lungs at exhale (PEEP) to make him work harder and help him hopefully come off the ventilator soon. Following that will be a decrease in breaths per minute, instantaneous pressure, and his oxygen level. If he does not come off of the vent in the next couple of days we will give him steroids to help his lungs develop faster. His bowels are still not working properly (no gasses in them) so no food again today. This is likely a side affect of the Indomethacin. This should sort out in the next few days... Nothing we can do but wait for this. His hematocrit is low again and he will be needing blood again soon. There is no sign of the murmur yet, sounds like the PDA is closed. I know he was smiling today during one of his cares and I swear if he didn't have a tube in his throat he would have been giggling. Overall things are better today and another win for Jackson. FOJSP. 

Day 14

Day 14

Jax day 14. 970 grams or 2lbs 2 oz. He is getting more fluids now but overall he is growing. His blood gasses show CO2 concentrations have been improving today and we have decreased the vent settings a little bit but primarily the same. He did not accept the milk yesterday so we are giving him a break from that for a little while. The X-ray of his abdomen shows no air present right now so we are going to wait a day or two to see if we can get his bowels working. The doctors don't seem too worried about this yet but it is a concern so we will be watching closely for any other indications of NEC. We can't hear the murmur right now so that is a great sign. His bilirubin count is low and the light is off for now. No more crap wrapped around his head covering his eyes! It's funny to watch the little guy he keeps trying to jam his thumb in his mouth but he can't with all that crap on his face. He managed to get a finger in earlier and seemed content with that. Today so far so good. FOJSP!!!

Before we left the hospital for the night they took one last blood gas test, and it came back excellent. Best results he's had so far. So they started to turn down his ventilator. It was our favorite nurse on yesterday, and she celebrated right along with us. Already the nurses have started to feel like family. I guess that happens when you spend the most stressful 12 hours a day with someone everyday. But it is comforting to know they really do care about your baby. 

We've been down this road before where we turned down the vent to just turn it back up, but we are praying the numbers keep going in the right direction and we can get him off this ventilator. 

Today Hunter and I also got diaper changing 101 lessons from the nurses. After mom changed his diaper solo and was bragging about how good it looked, Jackson decided to teach her a lesson by leaking out of his diaper and all over his bed. But I think it may have just been a ploy to get more mom and dad cuddle time, as we got to hold him while they changed his bedding.