Day 23

Day 23

Day 23: 950 grams or 2 lbs 1 oz. Jackson is having a good morning. The antibiotics seem to be working. He has come down significantly on his ventilator settings and has been at room air all morning. The blood culture came back and confirmed there is an infection in his blood. We won't know for 24 hours if it is the same infection as in his lungs. They are also doing a spinal tap tomorrow to see if there is infection in his spinal fluid. But the treatment is the same as what he's on now, antibiotics. It will just vary how long and how strong of a dose he will be on depending on the results. He is still having bile come back up his feeding tube and they don't want to try feeding again until that stops. They are going to reduce his sedation to every 8 hours in hopes that will help his bowels wake up. Hopefully they can try feeding again tomorrow. Jackson is resting peacefully now and hopefully the good day will continue to get better. FOJSP! 

Three Weeks

It's hard to believe Jackson has been here three weeks. This week has definitely been very challenging for us. It has brought one of the highest ups for us (Jackson coming off the ventilator) and one of the lowest downs for us (going back on the ventilator and not getting to hold him) on this awful NICU roller coaster. But we just keep reminding ourselves to focus on the positive and just keep thinking about how far he's come, how much he's overcome, and how good he's really doing all things considered. I was talking to another NICU mom tonight whose little boy is being discharged after 6 weeks here, and she reminded me to keep replacing fear with faith. To not focus on the little setbacks but to keep in mind that despite these, he will still go home at the end of all this. 

All tucked in and sleeping peacefully after a big day of getting a new IV and being re-intubated

Daddy's future little Sigma Chi, he did not want to let go of that ring

Enjoying his brief break from the ventilator

Day 22

 

Day 22: 950 grams or 2 lbs 1 oz. Three weeks old today! Jackson is doing good but it's been a little bit of a tough day for the little guy. He was doing so well on the oscillating ventilator that they had the settings turned down as low as possible. So it was time to switch him back to the normal ventilator. When they did this the leak in his tube was too big, so they had to switch out the tube. When they had put the tube in on Tuesday, his throat was too inflamed from being intubated twice that they had to use a smaller tube causing the leak. He is doing good on the new ventilator settings. He will likely stay on it until he finishes his antibiotics, at least 5 more days. He also needed more blood today. His hematocrit was down to 29 after needing blood gas tests run so frequently the last two days. He received 15 cc (3 teaspoons) of blood today. He needed a new IV put in this morning for that. Our little boy has been poked and prodded enough for today. They have given him Ativan to help him relax, sleep, and recover after today. FOJSP! 

Day 21

Day 21

Day 21: 870 grams or 1 lb 15 oz. After a very tough, and disappointing, day yesterday Jackson is doing much better today. He is really liking the new oscillating ventilator he is on. He has been very relaxed all day. His white blood cell count was very high and his blood sugar levels were elevated last night so they think Jackson has an infection. The did a blood culture today and initial reports show it is likely pneumonia, but we'll know more tomorrow. They have started him on a 7 day course of antibiotics today though. They think he may have been coming down with this and that is why he had such bad apnea attacks off the ventilator and why he has had such bad secretions, like the one that blocked off his tube. He was tolerating the feedings very well prior to going back on the ventilator, up to 4 cc every 3 hours. But they have stopped since to let his body rest and focus on healing his lungs. Today's X-Ray showed his bowels have gone back to sleep, completely white. But they did show his right lung has completely opened up again. His bilirubin is back down to 2.3, so he got a little break from light again today. All of the nurses are so wonderful, and their hearts broke for us yesterday. So today while changing out his bed, they let mom hold sweet little Jackson up for a minute. And both mom and dad got to steal a little kiss. Jackson is doing good, we take our wins where we can get them. FOJSP!!

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. 

Day 13

Day 13

No More PDA! The heart murmur is gone. Hallelujah! Praise The Lord. 

It looks like the final round of indomethacin worked to close off that last little bit of opening. We are really hoping and praying this is going to turn around his ventilator needs. When he was first born his lungs seemed much stronger and the doctors kept talking about him coming off the ventilator any day. But it seemed that PDA was really starting to give his lungs trouble and while the ventilator settings have fluctuated back and forth, ultimately they've been going up. So now that our prayers have been answered in closing that duct we are focusing all of our positive energy, thoughts, and prayers to his lungs getting stronger and coming off the ventilator. 

But this morning, it was like Jackson knew we needed a good day after the scares he's been giving us lately. Not only did we get the good heart news, he was very alert with his eyes open. And Hunter and I swear he was smiling at us. Here are the pictures, you be the judge...Just don't tell me if you disagree :)

Jax day 13: 920 grams or 2lbs 0oz. 

Dads little Sasquatch is having a good day. Boy is he hairy! His murmur is not audible at this point. Dr Berger is back on today and feels that if present it is not hemodynamically an issue. So he is off of the Indomethacin treatments! We are starting his feedings again at 1cc (1/5 teaspoon) of milk every 3 hours. His blood gasses are okay showing a little high on the CO2. They kicked up the vent rate to compensate. Hopefully we can wean him off of the vent soon. If we are unable to get him off of the vent by early next week we may be forced to intervene with a steroid called dexamethasone. It is not desirable to give preterm babies steroids as it has shown to possibly hinder neurological growth. This is based on past treatments in which they gave babies large doses of steroids for up to six weeks. We would be giving him a very low dose for three days. This decision will weigh the the benefits and the risks of him contracting bronchopulmonary dysplasia (BPD). BPD is nasty stuff and needs to be avoided. It is caused by immature lungs and prolonged exposer to a mechanical respirator. 

 There is a chance he will come off of the vent on his own first.  He is still getting UV treatments but his bilirubin numbers are low. They removed the IV from his leg this morning. He seems very happy to have the extra range to kick the nurses when they have to poke him. They suction his lungs out about every 3-4 hours to catch fluid buildup. He seems very peaceful and happy today. After his changing today I could swear he smiled at us. He is a happy boy. FOJSP!

Day 12

Day 12

Hunter has been sending out these little updates to our family every morning, but today we were waiting to get back the results of Jackson's echo before sending out the update so it didn't go out until 5. Oh was our family mad! So we've learned our lesson and won't be late on the update again. :)

Hunter does such a wonderful job of remembering everything the doctors tell us, and giving all the details. But today's update was a little scarier and he left out one of the best parts of yesterday. Hunter got to hold Jackson for the first time yesterday! Just a little bit, while they changed out his bedding, but it is still just such an amazing experience and we will take our wins where we can get them. Two pounds has never felt so unbelievably light. It's amazing to think he's all there. (Mom got to hold him a little bit too, but somebody was lacking on the photo documentation :). )

Jax day 12: 930 grams or 2lbs 1oz. 10 grams up from yesterday. The little shit about put mom and dad in the hospital yesterday. He was having a great wonderful day. When we rolled him to his back his vent tube plugged off. Renee (nurse) jumped right on it. They had to disconnect his vent and bag him to get his oxygen level back up. He dropped to 50% saturation and his heart rate dropped below 80bpm. They were able to suction the lungs and free things up and put him back on the vent. It felt like this took an hour and it was likely 5 min total. After that he was wide awake and got a little time with mom and dad. He was surprisingly calm after things mellowed out. 

This morning Doctor Simmons indicated that he may start to put on a little weight as he grows now. We can expect 10 to 15 grams a day soon. It looks like he is trending towards the 10th percentile for his age. His murmur is much softer than previously. It looked like the PDA is less open just by watching the echo. We will be giving him a lower Indomethacin dose for a few more days to help close the PDA the rest of the way. The PDA has closed from a 1.5mm duct to open only 0.5mm. There is no bile coming back up his feeding tube but he has not had a bowel movement since the the night before last so he got another suppository today. There is no air present in his abdomen so that is a little concerning but they are watching closely to ensure no blockage is present. He has his moments when we have to move him around... Gave mom and dad a heart attack again this afternoon. Similar story as earlier but his numbers were not as bad. He is doing great right now and we hope this duct closes and we can get him off of the vent soon. The nurses told us having a baby his age in the NICU is like a roller coaster. I beg to differ. it's more like jumping off of a bridge... Then trying to remember if you hooked up the bungee cord... This process repeats every three to six hours and you never remember to check the damn bungee cord. 

Jackson is similar to a good whiskey he gets a little stronger and a little better everyday! FOJSP!

Day 11

Day 11

Jax day 11: 2lbs 0oz. Little guy had a rough day yesterday afternoon. But things are going much better today. 

His right lung has inflated and his X-rays show much less fluid on his lungs. It is very possible that the PDA was closing then kicked open again increasing pressure on his lungs resulting in increase fluid. Dr Simmons came in last night again to double check his progress. He is watching his white cell count and his sugar levels very closely. We did see his sugar levels increase along with a small amount on the white blood cell ct so he feels it best to administer antibiotics. Babies his size take sickness very hard and it is the right decision to be cautious.

The murmur is much softer today. Yesterday the murmur was very loud around the time that he had his lung complications. The PDA is very elastic so it is not uncommon to open and close during treatment. The murmur sounds softer today again and we hope that it is a good sign. He has one more Indomethacin treatment tonight to complete the second round. He will have another echo tomorrow to review the status of his PDA. 

He is not discharging bile out of his feeding tube, he pooped last night, and his blood transfusion went well.  Things are moving the right direction. 

He is doing a lot better right now and he is one day older... one day closer to going home. Having bad days is just part of the battle but they will come and more importantly they will go. FOJSP!

Day 10

Day 10

Yesterday was a reminder of the roller coaster the NICU is. The nurses keep telling us it will be. For the last few days we had been coming in hearing he did great last night! Blood gas tests look improving! I had started to take those mornings for granted. Yesterday when we came in they told us he had been having some bad blood gas tests (which are indicators of how to wean him off the ventilator). Even though this is not terrible news and is somewhat to be expected with his lungs so underdeveloped, it instantly caused my heart to leap back into my throat where it has been lodged ever since. 

After that he calmed down and had a pretty good day. But today was more of that roller coaster ride. This morning he was fussy and his oxygen saturation kept dipping into the low 80s (they want him between 88-92). They repositioned him and he started doing great. We didn't hear a peep out of him for 3 hours. Hunter and I decided to step out for a minute to get something to eat. When we came back his saturation was low again. It was a very tense 3 hours of watching our poor sweet baby struggle. Nothing breaks his parents' heart like watching him scrunch up his face with soundless cries. But the nurses let us comfort him, cradling him in our hands and it is such a wonder to watch him calm down at the sound of our voices. And feeling him squeeze our fingertip with his little hand. Those moments are everything to Hunter and I. 

Jax day 10:  2lbs 0oz. 

He is needing a little extra help with the ventilator today so they performed an X-ray. It looks like the upper lobe of his right lung collapsed so we have turned him to his left side to take the weight of his heart off of the right lung. They are also vibrating his back to help loosen things up. This can occur due to fluid / gunk build up due to the presence of the ventilator line. He can't cough it out with all of that crap down his throat. They suction quite often to help curb this problem. The doctor ordered another 13 ccs of blood that he will be getting today. His hematocrit is at 35% and he would like to see it over 40% going forward. Blood gas numbers are about the same no improvement but they are not worse. The echo results showed that the PDA is not worse and possibly slightly better. So he started his second three day round of Indomethacin treatments last night. The murmur is less audible today and that is possibly a good sign based on the echo yesterday. His next echo should be on Monday to indicate results of the treatment. The primary reason they are focusing so much on this PDA is to get him off of the ventilator. Having that PDA open is causing a mixing of his blood. As his heart beats the non-oxygenated blood mixes with oxygenated blood then is pumped to the rest of his body. His lungs can be working but if the blood is not properly circulating they cannot deliver oxygen or expel carbon dioxide properly. This action is driving his overall oxygen saturation level down resulting in the need for an increased amount of oxygen purity (currently 33%). If we are able to wean him off of the vent and his oxygen levels are good the PDA is not that big of a deal. A lot of kids are okay with a partially open PDA. In Jax's case we just can't seem to get him off of the ventilator yet. He showed a slightly elevated white blood cell count this morning so they are watching that closely to determine if we need to give him antibiotics. No poop today yet but also no bile coming out of his feeding tube. He is peaceful and sleeping. He opened his eyes for mom and dad this morning. He is a sweet boy... But still full of piss and vinegar! FOJSP! 

Day 9

Day 9

Happy Valentines Day!

After finally getting his arm back from having it wrapped up for the arterial line. Such a little man lounging here. 

Jax day 9. 1lb 14oz. We have a pooper again! It had been four days since the last one so this is a good sign. Blood gasses came in pretty good. Respiratory side is good still but he is a little off on the metabolic side so they are countering that with bicarbonate and then will adjust his TPN regimen to normalize his ph. They removed the arterial line from his right arm and were able to get one into his belly via the small amount of his cord remnants. This will serve as a great central line to pull blood samples going forward. His hematocrit is 28 so they are giving him blood today 13 ccs so about 2.6 teaspoons over a three hour period. They want him over 35 hematocrit. He now has a new IV in his right leg to give him blood. They will leave it in at least a day in case they need to give any additional blood. This will be one of many for our little boy. At this age his blood cells breakdown more rapidly than he is able to produce them and they have been pulling a lot of samples that largely contributes to the anemia. He still has a murmur but it is not as loud. This is a double edged sword because a murmur is detected by the sound of the turbulence and if the duct opened more it would be more volume less velocity and in turn less turbulence. This is why they perform an Echo. He had his Echo on his heart earlier today. It looks like the PDA is still open but may be less open than before. The results will come back later and that will determine whether we run another Indomethacin or Neoprofen treatment or not. Very likely they will run one more treatment. Many times they will leave an open PDA if it is minimal and not causing problems. If it does not get better or gets worse there is a possibility that he will be transferred to primary children's hospital to have it surgically closed. They have been consulting with primary children's regarding his case. That is an example of an extreme case. This will be a decision for next week and we are focusing on day to day... And today has been a good day. He has been happy, he got his right arm back, he's been refueled, and full of piss and vinegar. He is a tough little boy and he has a feisty mom and dad that are here for him. FOJSP!!! (Fight On Jackson Shaun Parker)

Day 8

Day 8

Jackson day 8! 1 lb 14oz. I see less bile coming back up his feeding tube today. We hope we can get him to poop again. The Ativan will slow movements as well. No signs of blood and his tummy measurements are good showing no signs of distention (no indicators of NEC). We are going to give him a little suppository to help get things moving.  He started his third dose of Indomethacin treatment at 10:30 for his PDA. No  signs of side effects resulting from the treatment yet but the murmur is still present. His fluids have been cut back a bit to help that valve close. This will in turn keep his weight down for a few more days. They weigh all fluid given and taken so every vile is weighed before and after taking blood, every diaper is weighed empty and full to watch for complications with the drug. There is a chance if the treatment does not close the PDA completely, and he has no aversion to the Indomethacin, they will run another 3 stage Indomethacin treatment or go with a NeoProfen treatment. Blood gas numbers have been good from a respiratory standpoint but his ph is a little off so they counter that by changing his TPN (intravenous food). They will not feed him milk until after the Indomethacin treatments to curb the risk of NEC. He still does not need blood but he will very soon. He will need multiple transfusions while he is here. He is too small to produce enough blood and they have to pull a lot to continually check his stats.  They have been intermittently giving him Ativan for discomfort primarily due to the respirator. The doctor is pulling it so he will be fussy but it will help him get ready to remove the vent line in the next two to three days. They role him into new positions every 3 to 4 hours or so to keep his little head round. His Bilirubin (causes Jaundice) count is getting better and we are down to one light! Soon it will be off and then intermittently back on him as needed. They performed an ultrasound on his head this morning and it showed no signs of a bleed on the right and the bleed on the left is very small (Doctor assessed between a one and two) so very good and they will take another look at that in a week. ... This is a picture of little Jackson holding his mom's finger this morn. He's a fighter and he  loves his sweet mother. 

Jackson opened his eyes more than we've seen all week. He looks back and forth between mom and dad singing and talking to him. It is so wonderful to get to interact with him. 

Week 1

Happy 1 week Jackson!

It has been a very long and short week all at the same time, the days have all blurred together. We have so appreciated the outpouring of love, prayers, and support from our friends and family. Words cannot describe how difficult this has been and the range of emotions we go through on a daily basis. But it helps so much to know how much everyone cares about our sweet little boy. 

We wanted to keep everyone updated on how Jackson is doing and thought one central place would be the best way. Because if you ask me, I'm likely to give a vague answer focusing on only the positive. But Hunter has been doing an amazing job of sending a detailed update to our families that I will copy here. 

I started this blog when we found out I was pregnant as a way to remember and document all the new things we would be going through. Well this is certainly new. I can't bring myself to reread what I wrote prior to this. So if you go back and read them, please be kind on how naive I was. In a million years I never could have imagined this would happen. 

I am working on writing Jackson's birth story but the experience is still traumatic to think about and will have to come later. 

Day 1

Hunter arrived a few hours after Jackson was born, he had been in Gillette, WY for work. For those of you who didn't know, we were supposed to be moving there at the end of the month. They let Hunter and I into the NICU to see Jackson, even though the NICU was technically closed at the time. While talking to Jackson and telling him how much we loved him, Hunter said "How ya doing little buddy?" And I am not lying, Jackson put up his little thumb as if to tell Daddy "I'm doing ok, I got this."

Day 2

We found out Jackson has a grade 2 brain bleed on the left side and a grade 1 brain bleed on the right side that they are watching closely. Grade 1 and 2 are pretty common for babies this early and usually don't have any long term side effects. 

Day 3

This day was incredibly difficult as I was discharged from the hospital. Not that anyone wants to stay in a hospital but leaving our baby behind to go home felt impossible. But this was also the first, and only time so far, I have been able to hold our sweet baby briefly in my hands. 

Day 4

Jackson started getting his first breast milk. He got 2 cc every 3 hours. 2.5 cc is a half a teaspoon. So he was getting less than half a teaspoon but it was exciting. He also had his first poop that day. We've never been more excited. Changing Jackson's diaper every 3 hours is honestly one of the highlights of our day. Hunter and I wait around the NICU all day long staring at Jackson and waiting for our chance to change his diaper and be able to touch and cradle him. 

Day 5

Jax is doing okay today. Breathing is good. He has Patent Ductus Arteriosus (PDA) causing a murmur. It is very common in newborns. They have done an EKG and will likely be giving him medication to try to close the vessel bypass. He is not taking food right now and is having some bile back up in his feeding tube but that is not scary yet but they will be watching him closely for signs of NEC development. PDA can keep blood from circulating properly and can contribute to NEC. NEC is scary crap so we hope to get him past all this. He was a little fussy so the nurses let mom and dad cuddle him with our hands on top of his head and feet. He opened his eyes looked side to side and calmed right down. He seemed very at peace with mom and dad. He succeeded on making dad cry a little. He's a tough little guy and he knows he's loved. 

Day 6

Jax day 6! 1 lb 14 oz. Overall day is going well. EKG results came in late last night. The Patent Ductus Arteriosus (PDA) is open 1.5 mm so we started 3 dose Indomethacin treatment. This will help close the open artery that is causing the murmur and the blood to flow incorrectly. We will be watching him closely for side effects resulting from the treatment. So far so good. There is a chance if this does not close it completely (EKG on Friday to confirm) and he has no aversion to the drugs that they will run another 3 stage treatment . Respirator stats are good his ventilator is turned down pretty low right now we hope to wean him off of that as soon as possible. But it is a give take process and may take awhile. Blood gas numbers have been great from a respirator standpoint. His kidneys and liver are expelling a little too much so they counter that by changing his intravenous food (TPN). They will not feed him proper milk until after the indomethacin treatments to curb the risk of NEC. He does not need blood yet but he will very soon. They only use irradiated type O negative blood for premature babies. He will need multiple transfusions while he is here (all will be from the same donor) just because he is too small to produce enough blood and they have to pull a lot to continually check his stats. He still has bile coming back out of his feed tube so they are watching that closely. He is doing great overall and we are positive.  Shannon is sweet and is an excellent mother. Jackson can be pissed off then Shannon cuddles him with her hands on his head and feet. You can watch him calm down right away.  He loves his momma! 

Day 7

Jackson day 7! 1 lb 15 oz. they just turned down his oxygen to 21% so he is at atmospheric levels then back up to 22% . This is a game we play all day long and next time we move him we may need to adjust up for a bit then back down... I think he just likes to keep us on our toes. He is getting his second treatment of Indomethacin PDA. This will help close the open artery that is causing the murmur and the blood to flow correctly. No signs of side effects resulting from the treatment yet!!! They  weigh all fluid given and taken so every vile is weighed before and after taking blood, every diaper is weighed empty and full.  There is a chance if the treatment does not close the PDA completely (EKG on Friday will confirm flow) and he has no aversion to the drugs that they will run another 3 stage treatment. Blood gas numbers have been great last night and today. They will not feed him proper milk until after the Indomethacin treatments to curb the risk of NEC. He still does not need blood but he will very soon. They only use irradiated type O negative blood for premature babies. He will need multiple transfusions while he is here (all will be from the same donor) just because he is too small to produce enough blood and they have to pull a lot to continually check his stats. He still has bile coming back out of his feed tube but we are watching that closely but no signs of blood and his tummy measurements are good showing no signs of distention (no indicator for NEC). They are intermittently giving him Ativan for discomfort due to the respirator and only when he really throws a fit. They role him into new positions every 3 to hours or so to keep his little head round and this seems to help him loosen up gunk in his lungs that they can suction out via the respirator design. His bilirubin (causes Jaundice) count is getting pretty good and we may be able to turn down some of his lights soon. We asked the nurses for tips on the diaper and we are getting damn good at folding up the huge diapers so they fit the little fart. Jackson has lots of love and is doing great.