NICU 201

the nurses get crafty

Not much happened over the weekend except that I finally got over my strep and was able to go and see him again, but they were letting him rest all weekend, they started to feed him a tiny bit of milk every 3 hours (like 1-2ml) and they might let us start holding him!

On Monday Amber went to see him and he started spitting up, so they might have to cut his feedings and we didn’t get to hold him.  They did his head ultrasound, but the results didn’t come back.  Things were pretty mellow.  The NICU has the policy that they like the baby to rest as much as possible.

 The next day the result of the head scan came back.  He had a level two hemorrhage in his brain, which we already knew about, and a potential periventricular leukomalacia (PVL) in the frontal lobe in his white matter running to his basal ganglia.  This was super hard to hear; it basically means that there is a potentially a small spot in his brain that could die.  PVL’s have been linked to everything from having no symptoms or something like ADHD to learning disabilities, paralysis or cerebral palsy.  It will take approximately 30 days until they are to confirm whether or not he has one and then it will take a couple years to know the extent of the damage if he does indeed have one.  Doctor O’Brien, the medical director for the NICU at IMC, came and talked to us.  She was pretty awesome at comforting us without giving a false sense of hope if that make sense.  Pretty much she told us that PVL’s aren’t good and can cause all sorts of issues, but that we shouldn’t worry about anything until they confirm the diagnosis in 30 days and that even still as long as they are meeting their developmental goals we shouldn’t worry too much.  She said that some people research way too much and can freak themselves out by focusing on all the worst case scenarios.  She even had a little girl that had a fairly severe PVL and hemorrhage walk up to her at age two and say “Hi doctor.”  Then Doctor O’Brien said that she could hold Jason and that as long as he was doing okay that the nurses better let her hold him.

On Wednesday Amber started to get a rash on her chest and talked to the NICU because she was scared that Jason might get it from her, but they told her that he would be fine and that she could hold him again for 2 whole hours.  I don’t think Amber has been so excited in her whole life. That might be a little bit of an exaggeration, but she was super excited.  She spent most of the day helping with cares and holding him.  Her rash started spreading all over her body that night and they said that maybe she shouldn’t touch him until the rash went away.  Amber went to the doctor and got some medication for treatment to get rid of the rash, but it went away the next day without her even taking the meds.  Amber thought that she was allergic to her child or something, but we latter found out that he had a staph infection in his urinary tract that they couldn’t detect for a while and that they had started him on antibiotics to get rid of it.

We were so excited that things were going so well with him, in 2 weeks his breathing was doing great, he was on milk, and we could hold him and there had only been a few minor setbacks.  Friday came and he still hadn’t had a bowel movement so they cut milk out of his diet and told us that they couldn’t figure out why he wasn’t tolerating food well.  Dr. King said that it could be air in his tummy from his vent, he could have a blockage in his intestine, or something worse.   They gave him a day to rest and then tried to put a tube through his mouth into his intestine, they tried for 5 hours and it didn’t work.  Because of this, we were not allowed to hold him because he was tired.  By now it had been several days since they took him off of milk, but they really wanted to give him a few more days before they did a dye test (this is where they give him some fluid and then track it through the intestine using x-ray to determine whether or not there is a blockage.  Sometimes it requires surgery to repair and if this happened, he would be transferred to Primary Children’s.  We really didn’t want him to have to get surgery because at this young babies have a hard time with surgery.  Also they had to give him another blood transfusion because they take so much blood from him to do labs. 

On Sunday we had a super cool nurse.  She let us each hold Jason until he became ‘unhappy.’  It was super cool because this was my first time holding him.  He is so tiny and fits so snuggly in one arm, but it is a little weird because they really like skin to skin contact and so they ask you to take off your shirt to hold him.  Jason is a little funny and causes the nurses some grief because sometimes he forgets to breath and you can see his oxygen tank and his heart rate slow way down.  When this happens we try to gently stimulate him with a little pat or by rubbing his back just a little.  We were able to hold him for like an hour and thirty minutes between the two of us and then his oxygen started dropping and we put him back to rest.  Also he pooped like crazy today all on his own!  I’ve never been so excited about poop, but this means that if he keeps doing well they are going to put him back on milk and he wont need surgery (though we don’t know for sure yet).  They told us that they were going to try and drop his vent setting to the lowest settings during the night as well.

The next day Amber went to the hospital while I was at work.  The nurse definitely wont be one of our primary care nurses. When Amber asked to hold Jason she said that even though he was doing fine we should only hold him twice a week; which doesn’t make sense since the medical director of the NICU said we could hold him anytime that he is doing well. Holding Jason is an ordeal, it takes about 15 minutes to get all the different cables and lines in the right place so that we can pull him out and reach the chair without it pulling on his lines. I think there are a few nurses that don’t like spending their time doing this since it takes them about thirty minutes to do the set up and tear down; luckily I think they are in the minority.  

On the 18^th we got a phone call at 6:30 AM from the NICU.  They typically call every day, but not this early in the morning. They told us that Jason stopped breathing during the night and that they had to intubate (put a breathing tube down his throat) him and adjusted his vent settings; also Amber woke up with a super sore throat and an extreme headache.  We went to the doctor and they confirmed that Amber had gotten strep.  This wasn’t fun news because now Amber couldn’t be around Jason for a couple of days.  Jason seemed happier with the tube down his throat, but we were super sad because this meant his breathing had regressed a lot.  They kind of just let him relax for a few days since he got the tube.

Jason opened his eyes!!!!

On Friday we finally got the first good news of the week, they had started increasing his feedings.  He had never broken 2ml of milk per a feeding (they feed him 8 times a day), but when I went in his feeding were up to 5 ml and they were working on pushing his feeding up to 7 ml that night.  This was so exciting since his digestive system has struggled so much.  They told us that it is looking less likely that he will have to get surgery on his intestine since he was doing so well with his feedings.  This was so nice to hear this and on Saturday they moved his feeding up to 9 ml, 13 ml on Sunday, and all the way to 15 ml on Monday (24^th).  Also he opened his eyes for us for the first time (the nurses told us that he had opened his eyes earlier, but I don't think that counts).  When we were there on Saturday they told us that we could probably start holding him again. he is also now up to a whole 2 lb 2 oz! he is so big. Even though he lost 2 oz the next day.

On Monday Amber was finally able to hold him again for 2 whole hours! She was so happy and loved her nurse so much. It had been so long he seems big now. I personally think he does very well during kangaroo care even if he has low stats during his cares. He likes being cuddled. He is also a little heater. It is great he is able to regulate his temp well during holdings but… ugh it gets so hot! It was great he was able to be held though, hopefully the nurses will keep letting him come out and play. Getting to hold your child makes it easier to believe he is actually yours. It makes you feel more like an actual parent. Even if you do have to ask permission to do so.

Tuesday was a little exciting. Jason has been doing so well with his feedings they now have him up to his full feedings. (140 ml/kg fluids) they are also using a supplement in the breast milk to make it a little better for him. He has done really well with that to. Maybe now he will start getting through some of the milk taking over our freezer. He did so well with the full feeds with the supplement in it they got to take out his picc line. They are now constantly trying to lower his vent settings every day. Sometimes he allows it other times he likes to play the up down game. Today was one of those days. I think he just likes company. The nurse is constantly in and out of the room turning the vent up and down. I think he likes the game since he plays it so much. Hopefully they will be able to lower the settings enough to take the tube out soon. He is a lot easier to deal with that way.

We have had so many ups and downs lately that we actually did start to notice how much a good nurse means day to day. Even with the different mindset each nurse has about his care, Jason really is doing so well even with some of the setbacks we have faced.  We are so happy about what he has been able to accomplish in the past few weeks.  It is amazing watching his little body and ability to do things change as the weeks go on. I do feel like he does actually have somewhat of a personality and it is starting to show through the glass box separating him and the rest of the world. <(this is probably wishful thinking) I can’t wait for him and his personality to grow even bigger.

his umbilical cord came out. he has a belly button!

NICU 101

Day 1

Picking up where we left off, at 4:00 AM (2/1/2014) Amber decided that it was time to wake me up to go down and meet our new son for the second time (she can't really remember the first).  I got a wheel chair so that I could take her down.  When we arrived, it was time to start receiving NICU education.  I was fascinated by all that was going on.  The staff is awesome and has been very good at answering all of our questions and concerns. We learned that it took a little bit longer to stabilize him than normal because of him being born in the bed, but that he was doing fine.  His oxygen levels were doing really well, in fact they were only giving him ~25% oxygen (normal air has ~21) so that was good, the ventilator was set fairly high, but other than that his air ways were doing really well.  They did have to give him surfactant, a protein/fat mixture that occurs normally in lung.  It coats them so that they don't stick together when we exhale.  They told us that it was really good that he was able to get the 2 doses of the betamethasone to develop his lung.  

We couldn't believe that he already had hair on his head, it was really cute.  He started to move around a little bit so they decided that they were going to sedate him.  The biggest fear that they have with micro preemies is hemorrhaging.  This is because the vessels in the brain are so weak that it is very easy for them to rupture; they told us that most preemies his age will have some amount of hemorrhaging, but that he could still be okay.  They try to touch them the least amount possible during the first couple of days because of this, so they try to combine all interactions (diaper changes, temperature checks, suctions, etc.) to the same time once every 6 hours.  Jason's times just happened to be every 3:00 and 9:00.  They have a great team that consists of a respiratory therapist (RT), registered nurse (RN), nurse practitioner (NP), pharmacist, nutritionist, and neonatologist.

It was really cool to see how they did everything. They used the vessel in his umbilical cord to feed him and administer medicine and they used the artery to measure his blood pressure and take blood!  His bilirubin count was high so they put him under the lights and gave him a little mask to cover his eyes.  These can be used for up to 10 days!  They had to put him on insulin because his blood sugar sky rocketed the first day.  Amber got to touch him in the afternoon; it was actually kind of scary because they talked before we could do it about how sensitive preemies are and that you shouldn’t rub their skin or push too hard.  Amber cleaned her ring and took some a picture of Jason with it.

 

Jason holding Amber's wedding ring and wearing his sleep mask

Day 2

We went and visited Jason in the morning.  It was really good, his lungs had basically stayed the same, but his glucose was finally coming under control.  While Amber was being checked out by a doctor so that we could be discharged, I got to sit in with the team as they planned out his next 24 hours.  At first I couldn’t keep up, each of the people just rambled off a bunch of numbers from the past day (without saying what they meant).  As they discussed the plans for the next day they explained their decision to me and were really good at answering questions.  They told me that one of the nurses had heard a murmur during a check and that they were going to do an echo in a few days to see if it was really there.  Also his white blood cell count was a little high and they suspected that this was being caused by an infection and were starting him on antibiotics that covered a variety of infections including meningitis.  They said that if it didn’t get better that they would end up doing a lumbar puncture to make sure that he didn’t have meningitis. Also his weight had dropped to 750g (1 lbs 10 oz) and they were going to up his proteins a little to help with this.

Amber was discharged from the hospital and we left to finally shower at home.   The best i can describe is it was a really weird feeling to leave our baby at the hospital as we drove home. It was more nerve wracking than driving home for the first time with Jake. 

We returned to the hospital in the afternoon and got to participate in his 9:00 PM checks.  I swabbed his mouth with water and Amber changed his diaper.  I think that she was a little nervous about this since you have to lift him by his thighs by pinching them between 3 fingers (thumb, thigh, pointer finger, thigh, middle finger), then you lift them up an remove the diaper and put a new one on.  He is in the smallest diapers and the still have to fold them down so that they aren’t clear up over his belly button.  He lost another 10 g, but his glucose was doing really well.  They cut the amount in half because it started going too low.  They are hoping that it will now balance out around were it is suppose to be.  They took him off of the lights because his bilirubin was low enough, but told us most likely he would have to go back on.

Day 3

We spent most of the afternoon with him today; he was still doing really well.  They are keeping him on the reduced insulin because he finally stabilized where they wanted him to be.  That was good to hear, but his breathing still hasn’t changed.  He had to go back under the lights because his bilirubin count went back up.  He doesn’t need oxygen, but they have to give him a bit of air for him to breathe (amplitude 20, mean 9 for those who know about ventilators).  I got to check his temperature today and Amber changed the diaper again.  They did an echo and it turns out that he has a medium size PDA, which is basically a murmur where a valve doesn’t close off at birth.  They needed to put him on some medication (indomethacin, I think) to help this close off, but it doesn’t allow the platelets to function correctly which is bad if they happen to have bleeding in the brain.  Before they started the medication they performed an ultrasound on his head to check for hemorrhaging.  The radiologist said that there was minor bleeding that had occurred, but the medical staff decided since it was so small and done bleeding that we needed to go forward with the medicine.  They also gave him a blood transfusion of 12cc of the finest O+ blood they could find. I started feeling sick and we left (if you have any symptoms of anything you aren’t suppose to come to the NICU until they have been gone for 24 hours).

Day 4

I woke up with a super, sore throat and a headache, yeah for me.  I love strep. This means that I can’t go to the hospital for a few days, so all that you will see for the next few days is regurgitated from Amber.  His blood sugar finally regulated which means no more insulin, yeah!  They tried to turn his ventilator settings down again today, but he didn’t like that so they had to turn them back up.  He was taken back off of the lights again, yeah.

Day 5

Today was an exciting day; they took Jason off of the big ventilator and moved him to a smaller less damaging one.  He still has his breathing tube in, but since he is on the lowest settings if his blood gases continue to look good they are going to pull his breathing tube out.  On the downside, he finished taking the medicine for his heart and they did another echo and the PDA is still there.  They are going to start another round of the medicine because it is working and the murmur is really small now.  After he finishes this round they might take the tubes out of his belly and give him milk! 

They put blankets to hold his arms down because he kept trying to pull the cords out. No more breathing tube

Day 6

Not much happened today, Amber spent most the day with Jake and Jason is still doing good, but his infection is still there so it looks like they will probably be doing a lumbar puncture tomorrow.  He finished the meds for his murmur, but the results for the echo haven’t come back yet so we don’t know if it was successful or not.  Amber did get to hear him cry for the first time today, she was so excited. There is nothing like not being able to hear your child cry to make you want to hear it every chance you get.  He did gain a whole 2 oz! He went from 1 lb 6oz to 1 lb 8 oz. He's getting so big! 

Day 7

There was quite a bit that happened today.  The results for the echo came back finally; he still has the PDA and it didn’t really change this last time.  This is keeping them from upping his fluids very much, but they upped his proteins, sugars, and lipids a little.  They are hoping it will close off on its own, but if it doesn’t and starts causing him any problems he will have to be transferred to primary children’s to have surgery to close it off.  We are really hoping that it will just close itself off though.  Amber got booted from his room for a couple of hours for the lumbar puncture to check for meningitis.  They go around and sterilize everything in the area for like 1 and ½ hours and it needs to stay that way after until it stops leaking.  We were really hoping that he didn’t have meningitis, but we had to wait for a few hours to find out.  If everything looks good, they will start giving him milk tonight.  He didn’t have meningitis, which is awesome, so they are going to change his antibiotic again to focus on other types of bacteria.

It is amazing to see how much can change in just a week of little Jason's life. He is our little crazy miracle. He does seem to keep us on our toes. He knows exactly what he wants when he wants it. He is doing just as good as can be expected of him and we are so proud of him fighting so hard. 

We are so thankful for the people that have helped us so far and who have offered their services to us. Our family feels the love you have sent to us in many ways. We know this will be a long journey for our family and we are sure we can use all the help and prayers we can get. It's comforting to know so many people are here for our family at our time of need. 

Delivery

As you may have noticed, we kind of have a Jason Bourne theme kind of going on here.  Bear with us, I promise it will get better.  Anyway to the story.

Jason's First Photo

Back Story

Kaysville, UT 1/29/14 0700- Amber starts experiencing contractions that are weird and irregular. her not being sure if they were contractions or just being uncomfortably pregnant she decided to ignore them.

Kaysville, UT 1/29/14 1730- Steven gets home from work and Amber is complaining about the weird contractions, but doesn't want to go to the hospital again (we had had a slight hiccup about a week prior that didnt end up or reveal anything significant.).  Amber eats dinner and goes to rest trying to determine whether or not to go all the way to the hospital for another false alarm.

Kaysville, UT 1/29/14 2015-  Amber finally decides that it is time to go to the hospital and see if the contractions she was feeling were real and why they would GO AWAY!  They leave to take Jake to sleepover at Grandma and Grandpa's house.

Murray, UT 1/29/14 2130-  Arrive at hospital after dropping Jake off. Many test are run to figure out why the contractions are happening. (they were real, she wasn't just complaining.)  She is given IV fluids and nifedipine (I think) to stop her contractions. The doctors end up deciding to move Amber to L&D to give her  betamethasone (a steroid that helps develop the lungs of the baby in case of  preterm birth) and continue the IV fluids.  Betamethasone is given in two shots 24 hours apart, so Amber is admitted to the hospital.

Steven sleeping while Amber was getting tests

Kaysville, UT 1/30/14 0830-  Dr Terry (Amber's doctor) comes to visit her.  He checks her out and it appears that everything is okay and that he doesn't see anything changing before her next appointment on Feb 11, 2014.  They admit her to wait for the second betamethasone shot that will be needed at 0200 the next morning (they were not holding her because they expected complications). Amber is moved to the maternity unit.

Waiting

I'm going to change the way that I am writing this because Amber thinks that I'm a robot that doesn't have emotions.

Gross hospital food

At 6:15 PM Amber went into the bathroom and shouted "Steven, call the nurse." I kind of panicked a little bit at this point, I couldn't even find the call nurse button for a while.   I called and she came in.  She looked and said, "Whoa,  I'll go call the doctor.  Page me if anything else happens."  And then Niagara Falls happened and the nurse finally said, "Keep paging me so I know, but I'm not going to keep coming back unless something changes." About 7:00 PM they come in and say, "We are going to transfer you to labor and delivery. I think you know, but it looks like your water broke."  Those words were so hard to hear; I mean who wants to here that their water broke at 25 weeks and 2 days?  Amber started crying as we walked to the elevator to go back to L&D.  The nurse explained that it wasn't completely unheard of for this to happen and that women have gone weeks on bed rest after their water broke.

Labor

We got to L&D and there was so much going on.  We were so scared at this point.  This is where I could no longer hold my manly composer any longer.  I asked if she would like a blessing and she said yes.  I then attempted to call my dad a dozen times, but couldn’t bring myself to make the call.  I don’t know why, I think that once I made the call I would finally have to accept that things were not okay and that I was not okay. It was the hardest call I have had to make in my life. I finally made the call and my dad asked how it was going and I said not good.  I lost it at this point. Luckily my father was able to ask questions that I was trying to say, like, “ have given her a blessing” and “do you have oil.”  Basically I could only say yes or no on the phone, but we were able to make it through the conversation with my dad getting the stuff that he needed to know.  

They kind of transferred everything over to the high risk team, which consisted of residents, students, and doctors since they always have doctors at the hospital and the standard OBGYN’s only have on call doctors during the night.  They were great. (Ambers dr decided this weekend was a great one to go on vacation.)   First we were visited by a resident that night, she explained that unless there was an infection, bad vitals on mom or babies side, or Amber went into labor naturally that they would just put her on bed rest and Amber would be bored and could pick up a new hobby.  The way that they tell if mom has an infection is through a fever, high heart rate, and contractions.  They decided to keep the IV fluids going and added antibiotics just in case, and magnesium solfate to help protect the babies brain.  Magnesium solfate does some weird side affects, like making your heart rate go up and giving you hot flashes. So Amber had contractions and a high heart rate (they thought that this might have been caused by the magnesium solfate).  Next thing you know at 1:00 AM Amber had started to get a mild fever.  This was scary because it meant that we might not be waiting to deliver the baby.  At 2:00 AM they gave her the second betamethasone shot and rechecked the temperature and it still was high.  The resident came and informed us that the team had decided that it was necessary to deliver the baby.  This was also hard, nothing was going correctly.  The fake contractions were real, her water broke and now there was an infection. Every worse case scenario that we were told at each stage was coming true. 

They had a neonatologist come and talk with us about all the statistics and what to expect with a micro preemie to live or have serious learning issues and such. Amber didn't hear much, her contractions started to get bad at this point. Then they started Amber on pitocin and gave her an epidural (which she was hesitant to get since it did not work perfectly last time). I think I got a solid 4 hours of sleep that night and Amber got like 2.  The room was freezing because Amber was having the hot flashes and I was next to a very drafty window.  Any one who has been to a hospital understands that the blankets are not that good. I had 3 or 4 of them because Amber didn't want hers. We were woken up by the nursing staff doing a bunch of checks and everything looked good.  The day time high risk staff came and visited with us.  They were going to let the delivery progress on its own as long as mom and baby were doing okay and it was actually progressing. They told us it wasn't uncommon to go 24-36 hours.  We hoped it would last as long as possible because with babies this young every day make a huge difference, especially now that the betamethasone was in place.  

The day was pretty calm, we even had some family come visit us so that we could pass the time.  My mom brought Jake and it was so good to see him.  He is the best little boy.  He did not like the hospital room though, he wouldn't even interact with Amber, so I took him for a walk.  It was nice to get my mind off of everything for a little bit.  We got some ice cream and lunch.  Obviously Amber wasn't able to eat since she was in labor, but what made it worse is that they wouldn't let her have water or ice chips from probably 2:00 AM to 2:00 PM.  Her mouth was so dry;  they gave her these swabs that taste like mint and a toothbrush to help.  She hated the swab and decided to brush her teeth with lot of water like every 10 minutes.  Eventually she got a nurse that let her have ice chips and she was on cloud nine.  She continued to progress slowly, in fact, they kept upping her pitocin, but she stayed at a 3 for hours.  Then they brought up a C-section.  They had told us about this, but we really didn't worry much since it only happened if things got bad ( things were actually going somewhat good for once).  With preemies they have to make 2 incisions, one that is horizontal on the skin and a vertical one on the uterus.  If this happens she will have to get C-sections for the rest of your pregnancies.  Amber did not want a C-section at all, but honestly who does.  We fully expected her to have to get one since nothing else was working out.  

Amber's cup of ice. Yeah! Best nurse ever!

Pretty much we were exhausted  (I don't know if I can complain because I at least had food and wasn't in labor).  Amber's parents arrived and we visited.  They went to pick up some stuff from our house for us since we didn't pack anything.  We didn't expect to be having a child yet.  They did a check and found out that she was now at a 3+ and maybe even a 4.  Finally, they were getting a little more comfortable and the C-section talk was delayed for now.  When Amber's parents returned we had my parents bring Jake so that he could go with her parents.  I went out  to get the car seat for them and I came back to the room at 7:45 PM.  I laid down to take a nap and Amber had a really bad contraction.  The babies heart rate dropped to 58 bpm (normal is 120-160 ish).  The nurse came in and had Amber roll over to see if a different position would work better.  She started taking vitals and said if this happened again she would check to see if Amber had dilated further and possibly call the doctor.

Delivery

Amber's next contraction happened.  The hear rate dropped again and Amber shouted, "I feel pressure, a lot of pressure."  Amber pulled back the blanket and our son's head was already out.  Then he fell onto the bed.  This was honestly the scariest moment of my life.  I started running around the room trying to think of what to do.  The nurse pulled the code blue alarm on Amber since it was the closest thing and she didn't want to leave the baby.  Our son, Jason, was laying on the bed and trying to cry (which is good since it means he is getting air in his lungs),  the nurse kept shouting the the heart rate was good and he was breathing.  After what seemed like an eternity, but was more like 30 seconds to a minute, doctors, nurses, and NICU staff had flooded our room. The high risk people had left the OR to come.  Amber was having a hard time, but who wouldn't she was saying how little he was and that he was only the size of a barbie.  I tried calming her through breathing exercises and having her focus on me and not the baby.  She started to calm down, but kept asking questions like, "Why are they putting plastic wrap on him?" (FYI it is used to keep them moist and warm).  He was born at 8:01 PM and by 8:15 PM only Amber, me, and the nurse were left in the room, which had been left in complete disarray due to the code blue.  This was easily the longest 15 minutes of my life.  We can't really remember a lot of what happened, but it seemed like it was lasting forever. So yeah we thought the C-section was the worst case, but once again giving birth with no one there is even worse, especially since with preemies they give birth in the OR even if you aren't having a C-section since there are windows to pass the baby to the NICU. We spent the next 40 or so minutes sitting there shaking, trying to figure out what had just happened. Doctors told us that Jason was doing great considering the 'non-ideal' circumstance in which he was born.  Then Amber fell asleep and I went for a walk to try to calm down. We finally got to see Jason about 2 and a half hours after he was born on our way to postpartum.  

Meeting

They took us the back way into the NICU. Amber started crying before we got to the room. We went in not knowing what to expect when we saw him. We walked in and saw his little body laying in the man made uterus.  He was, and still is, so cute.  We asked a thousand questions about what was going on, 'why was his body shaking', 'what were all the different tubes and wires', etc.  They told us that he was doing amazingly well considering everything that had happened.  They hook them up to a ventilator that puffs about 600 time a minute, this causes him to shake, but it is much better on the lungs than a normal ventilator when their lungs are so underdeveloped.  Amber asked if he had webbed toes, so they showed us his feet and thankfully (at least according to Amber, I don't have a problem with webbed toes) he didn't.  We felt so much more comfort after seeing him this time; we knew he was in great hands and that he was going to be a fighter.  He weighed a whole 810 g (1 pound 13 ounces), they expected him to only weigh 700 g (1 pound 8.5 ounces).  He also was 13 inches long, much bigger than a barbie doll. After this visit we went to postpartum were Amber had a whole bunch of tests done and finally ate the 'best sandwich ever.'  This gave her a second wind while she was getting all of her tests done.  I fell asleep at 11:30 PM.  She stayed awake and woke me up at 3:30 AM to go see him again. 

One of Jason's first photos

Steven really hasn't given himself enough credit for how amazing he was through the process. He had enough emotion to not be a robot but he stayed calm enough for me; being calm enough to sit and help me breath when I wasn't able to figure out the process on my own when things were chaos was really the best thing he could have done. he was able to comprehend what the Dr's were telling us when all I could think was when ever they said something bad could happen it would. He was more realistic and took the hits as they came and quickly overcame them to help me understand what was going on.  The experience was the most terrifying one of our life. It was also the one that made our marriage and our faith the strongest. Going through something so traumatic was so hard but we did it together. Looking back we saw all the blessings God had given us through the whole 48 hours. A lot of bad things happened but in those bad things a lot of small things were done to make a big difference in the good outcome of our sons amazing life. Steven is the biggest blessing in my life.  Every time something bad happened and my husband was right by my side helping me understand, I fell in love with him all over again. I'm so happy he will be the person I will be the person I grow my family with and will be with for infinity and beyond.