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. 

Hello Hormones, Goodbye Brain

Oh boy have the hormones started to set in! You know that moment when you know you are about to cry and you know it is completely irrational but there is no stopping it? Welcome to my life. All. The. Damn. Time. Here's a list of really awesome, completely senseless reasons I've cried lately:

• I had to change doctors from a female doctor to a male doctor, so I cried on the phone to the receptionist
• Again with the doctor's receptionist, I wanted to make my appointment for Friday, she said they only had Wednesday available. So I bawled like a baby. (I bet OB/GYN receptionists get this a lot. If so my apologies to them everywhere)
• Biggest Loser makeover reveal week. Enough said. Pass the tissues.
• Hunter left to go out of town on a Tuesday. I was going to meet him Thursday morning. I cried for three hours. 
• I only had 20 minutes at work to run and grab some lunch. I couldn't decide what I wanted to eat and was really stressed out by this decision. So I wandered down 25th street crying until I decided on a sandwich. 

I know there have been countless other times. I'll try to keep a running list for future updates. But if you see a pregnant girl crying for no apparent reason, just give her a tissue, some chocolate, and walk away slowly.

To make room for all these hormones I think my brain has checked out, hopefully not permanently. I literally cannot send a text, IM, or email without forgetting at least one crucial word. Go ahead, re-read this blog I guarantee there are sentences all over the place that you're like, Huh? What was she trying to say? Its like real life mad libs. Just start filling in the blank with the noun/verb/adjective of your choosing.

Me: "I'm running to the ____ after work, do you need anything?"

You: Circus? Sure, I'll take an elephant! 

See how fun this can be?

In other fabulous news, no gestational diabetes for this girl! I celebrated with a box of donut holes. 

Photo Credit: Pregnantchicken.com

Sweet dreams are made of these

I think the crazy dreams is one of my favorite things pregnancy has brought on, right behind as much ice cream as I want and stretchy pants. Last night was quite possibly one of the funniest, most outrageous ones yet.

I dreamt I was at the doctor's office, waiting for my exam. The doctor then asked me to lie down, put my feet up, and... smile. Huh? It was time for my complimentary teeth whitening! What?!?! Best part is in my dream, the doctor is telling me don't forget to turn your head side to side so the light hits all your teeth. Next thing I know I'm waking up smiling ear to ear, baring my teeth, and turning my head side to side!

Apparently I am not the first person to think it would be fantastic if all those doctor's visits came with a bonus. While researching new doctors I found an OB, who in addition to delivering your baby, also does lipo, botox, and laser hair removal. Have a baby and a tummy tuck all at the same time. Sounds brilliant to me, sign me up!

Halfway! And then some

I knew I would be bad at this whole blogging thing. So here are some updates that I missed in the last month:

We had our second ultrasound at 19 weeks, and it's a boy for sure! We are so excited. I have to say big brothers are the best (that's right, Kyle, I said it!) and I'm so happy that we are having a boy. Hunter is over the moon excited. He has gone a bit overboard with the shopping, which is really cute but we're going to have to work on his style. He's mostly frequented the baby section at Spencer's and the Harley Davidson store (who even knew these places had a baby section?!). I'm not sure how I feel about dressing my baby in only ironic onesies. Its been a flashback to his obsession with buying himself shirts with dumb sayings that only 15 year old boys wear and think they're cool, not 30-something grown men. (i.e. 'I got to second base with a TSA agent') But regardless of Hunter's fashion sense it is still adorable how excited he is.

Made it halfway! Although calling 20 weeks halfway feels a little like cheating, considering I didn't know I was pregnant until 8 weeks into it. But hey any excuse to celebrate a milestone, right?

My parents came to visit for Christmas. It was such a great week hanging out with them. Relaxing, shopping, enjoying chocolate & coffee every morning with my mom (It's our favorite treat and one of her secrets to a long and happy life. Don't worry, I had more chocolate than coffee), and eating cheesecake every night after dinner. The desserts had to be one of my favorite parts of this week. Finished breakfast? Have a piece of chocolate! Lunch is over? You deserve a cookie! Done with dinner? You guessed it, bring on the cheesecake! 

 Wally wanted in the picture too

 In my Christmas jammies...

 A famous saying amongst my family

The beautiful wedding quilt my mom made for us, she recently finished so it was a wonderful present we got to open this Christmas. It really brings a lot of cheer to our guest room.

All this sugar may have also contributed to the fact that I started feeling the baby kick, a lot! It seems so surreal that going in for my 19 week ultrasound I remember talking to my mom and saying I thought I was starting to feel the baby kick but not really sure. Now 4 weeks later and these are undeniable, serious kicks happening in there. Hunter has even been able to feel a few. 

Feeling those kicks are the highlight of my day. And when I don't think I've felt them recently enough I start to get paranoid. I can't help it, I tend to be a pretty paranoid person. But I prefer to call it cautious. And I can just picture my Dad telling me that it's smart to be cautious, so I'm sticking with it. I downloaded the Ovia Pregnancy app for the kick counter because it's so easy to quickly track how many kicks I've felt and brings me such comfort to be able to look back at how active that little guy has been. Added bonus, it has fun little tidbits about the baby's development and advice for me on how to be healthier. And down the line it also has a contraction counter that I foresee coming in handy.  It also has trackers for daily calories, activity, and sleep but currently the sleep tracker only lets you put in the time you fell asleep and woke up. It is missing a spot to track the twelve times you woke up to pee or because your back hurt. So until it adds that feature I'll stick with the other benefits of the app.