Day 28

I can't believe our sweet Parker has been with us for 4 weeks! What a four weeks it's been. He was quite restless this morning, so he got some Ativan to calm him and he slept like a baby all day! There were some pretty significant changes made down on the vent last night, and he did well throughout the day. No desats However his chest X-ray still shows some extra fluid on his lungs, so he got more Lasix. Feedings are going well. He will keep the continuous feeds at 0.5cc/hr for a few more days before we advance. He is progressing along, and we love it!

Day 27

Parker is doing well with his feedings in the new placement of his feeding tube. His ostomy continues to do well. Made some vent changes this afternoon, we'll see how well that works for him through the night. Praying for improvements.

Day 26

Parker was very awake and alert most of the day today. That always excites us! He had a hard time with his feeding last night so they kept him NPO. His doctor decided today to push his feeding tube a little further down into the duodenum and do a continuous feed that way. We will see how he does with that. We have all been frustrated with his feedings and him riding the vent. The doctor said that a course of steroids should help his lungs and hopefully get him towards coming off the vent. He will also be getting a blood transfusion tonight. The good news is that he is getting stronger and gaining weight.

Day 25

Not a bad day. Weight still about the same. He had trouble with his feeds last night but did well with them during the day. Had his head ultrasound today. Showed the right ventricle is slightly larger from last week. We will continue to do weekly ultrasounds and daily head measurements. Bumped up the vent last night, and then made a small change down on it today. He wants to be a lazy boy and have the vent do all the work. John and I give him pep talks every night before we leave. He was very wide eyed when did his cares this evening. We love when he opens his eyes!

Day 24

Parker started back on his feedings today. 1cc every 3 hours. Going to take it nice and slow again. His weight today is 2 lbs 10 oz. Made some minor adjustments down on the vent. Overall a good day again.

26 May update

Day 23

A very restful day for Parker. Rode the vent pretty much all day. I guess he deserves a lazy day. Still NPO(that means no mothers milk for him). They're gonna do an X-ray tomorrow morning and we'll be sure that his belly is ok and maybe start back on feeds. Made a couple of vent changes, but nothing major. Up and down all the time. I'm used to it now

25 May update

Day 22

Status quo for our little Parker. Still going slow on his feedings. Held off for tonight, saw some little dark flecks. Nothing huge, so we'll let his tummy rest tonight. Our focus is maintaining nutrition. We'll worry about the vent later. He did pretty well with his breathing today. Not too many games with the vent. Boy do I love that sweet little face of his. Especially when his eyes are open and he looks at me with his googly eyes. Sweet sweet boy!

3 weeks old

Happy 3 weeks Parker!

24 May update

Day 21

Parker had a good day today. Doing well on his feeds. He gets mothers milk, 2cc every 3 hours. Vent settings are still the same, he didn't need many oxygen boosts today. I had a first today. Parker peed on me! I was helping the nurse change his ostomy bag and half way into it I felt wetness all over my hand and arm. Little stinker! I had even just finished changing his diaper. Oh the joys of having a boy!

23 may update

Day 20

Another day of up and down on the oxygen levels. Which is par for the course when you're trying to wean a little one off the vent. We've decided he' happiest when he's lying in his belly. He started mothers milk this morning at 2 am. He gets 1cc every 3 hrs and the doctor wants to bump him to 2 cc every 3 hrs for the next 5 days. We will see how he does with that. He missed 2 this afternoon because he still had some undigested milk in there. His little belly doesn't know what to do with it. Hopefully he will tolerate it better as the days progress.

Eyes wide open

Parker opened both of his eyes for daddy today! He was so excited to see both eyes wide open.

22 May @ 2031 Update

Amber's update on 22 May @ 2031:

Day 19
Well as many of you know today was a great day! Being able to hold my son was one of the most wonderful things in the world! Made me feel more like and mom. And I know Parker loved it too. He remained so calm the whole time I held him. That's all I've wanted to do is snuggle with my little boy. The rest of his day went pretty well. He was a little upset with his doctor because the doctor woke him up from his nap. He had a hard time settling back down. Mama was there to hold his arms though. X-ray of the belly looked good. They started him on some pedialyte tonight and if he does well with that he will get mothers milk in the morning. We're going nice and slow. No need to rush. Made some vent changes, so he has to work his lungs a little bit more. Such an amazing boy!

21 May @ 1908 Update

Amber's update on 21 May @ 1908:

Day 18
Another good day for Mr Parker. Probably one of his better days today. Follow up ultrasound of his head shows his bleeds are stable. His arterial line came out today. Most of the day he was on room air, only needed a few boosts of oxygen. We got to see him open his eyes really wide today too. Always exciting for John and I to see him looking at us. Dr says all is progressing well. We will slowly wean the vent down and maybe start feedings tomorrow depending on his X-ray. There's even talk about me holding him while they change out his bed!!

Holding Parker for the first time

What a great morning! I was able to
Hold Parker for the fist time. I was a little nervous at first. I was so fearful that his oxygen levels would go down and that he would have problems, but he did amazing! He was so calm and did so well the entire time. It really made me feel like a mom having my baby lie on my chest. That's all I've wanted to do since he was born, snuggle with my son. So glad we had the opportunity to do that. Daddy's turn will be next time. He better shave that chest first :)

Parker Practices for Halloween

Parker told us he wanted to be Pop-eye for Halloween this year. He is already practicing. Today he opened his right eye really big for us. We were so excited. It always makes my day to see my boy looking at me even thought I learned that I am just a big black and white blur to him right now. I can just image his says "Ciao Papa!"

20 May @ 2030 Update

Amber's update on 20 May @ 2030:

Day 17
Another good day today. O2 levels weren't so great this am so vent settings were changed a little. Did a lot better in the afternoon. Doctors are talking about weaning the vent every day. Still holding off on the feedings. We take it a day at a time. He gains a little weight every day. He's up to 2lbs 6oz. John and I are both holding strong. It's amazing how much closer this little one has brought us together. We have spent more time together than we ever have before. Love it!

John's input:

Thank you to all the family members, co-workers and friends that have taken the time to stop by and check up on us.  Thank you to all those who keep tabs on the situation via text, facebook and this blog.  The support is overwhelming and we are truly grateful for everyone's love and prayers.  It makes it easier to deal with our situation knowing that we have so many people looking after us and caring about the situation.  Our Bishop took our first family photo today (Thanks Bishop!).

We have noticed that Parker is growing bigger and even repeat visitors have noticed as well.  Amber and I were noticing his hand yesterday and how big it looks.  It was laying on this chest and seemed to cover about 2/3 of it.  My sweet mother send us a picture of Parker's weight a few days back (see first picture below) and so we decided to do our own weight comparison (see second picture below). For the second picture he is 100 grams under the actual weight in the picture (or about 2 cookies less).

19 May @ 1930 Update

Amber's update on 19 May @ 1930:

Day 16
Parker had an eventful morning. We know he's getting bigger because he needed his breathing tube changed out to a bigger tube. They had quite a time getting it back in! I was a little nervous but finally it was in and he's been breathing great ever since. He got another blood transfusion today, mainly because of all the blood they've taken from him over the past few days. It's hard for these little ones to reproduce blood fast enough. Everything else is going well for him. He's even gained a little weight!

18 May @ 2037 Update

Amber's update on 18 May @ 2037:

Day 15
Another good day for Parker. No major issues today, just the usual continual changes to the vent when his blood gases are done. we were a little concerned about the brusing on the left side of his belly, so he had an xray done. It didn't show anyting abnormal, we are happy for that. we like the good days like this!

17 May @ 2032 Update

Amber update on 17 May @ 2032:

Day 14
Parker had a pretty good day today. Started him on a pain drip to manage his pain. He had a rough night last night with pain. All the doctors are saying he's doing well. Labs are all doing good. Just keeping an eye on his belly and letting it rest. So no milk for at least a week. He still gets nutrition through his PICC line. He's back on his phototherapy today. Still doing well on the vent. His oxygen levels still tend to drop every so often, so we have to increase the oxygen, and then he does too well do they decrease it again. I learned a new phrase, it called "chasing the vent". He is such a strong kid!!

16 May @ 1828 Update

Amber update on 16 May @ 1828:

Day 13
Poor Parker had a busy day today. New PICC line, adjusted his breathing tube and had a bag placed over his ostomy. He didn't get to be left alone till almost 5pm. But all things that needed to be done. On the bright side his ostomy put out quite a bit of stool. The surgeon was surprised it was already working. He tends to surprise all of us. Such a trooper. Hopefully he gets some good rest tonight

15 May @ 1805 Update

Amber's update on 15 May @ 1805:

Day 12
Another restful day for our little man. Abdominal X-ray this am showed that he has better gas patterns in the intestines and less swelling. Ostomy is draining just a tiny bit. Nurse said she heard some bowel sounds in his belly which is good. Nurse has been good about giving him pain meds before we do his cares (cares consist of temperature taking, diaper changing, suctioning, cleaning of the mouth, eyes, and cleaning the ostomy site). We have been very lucky with attentive and caring nurses and doctors.

14 May @ 1930 Update

Amber update on 14 May @ 1930:

Parker had a very restful day today. They did a repeat head ultrasound that didn't show any changes in his bleed. His abdominal X-ray tonight showed better gas patterns but some ascities and swelling which is expected. He is getting some more FFP to help out with his swelling. We know that Parker knows when we're there with him. Whenever we say goodbye he always raises his eyebrows and moves a little. Love that little man!

13 May @ 2200 Update

Amber's update on 13 May 2200:

Day 10 

What a day, what a day, what a day! Baby Parker sure did make up today for all of his good days he's had in the past. We came in this morning with an ok report. He had some more bile come out of his OG tube. Abdominal X-ray was taken and Dr said there was one area they were going to watch, ordered another X-ray for the late afternoon. When I changed his diaper at noon I noticed his stomach was bigger and more firm and more dusky looking. Afternoon x ray showed some concern so they took another shot from a different view. The dr came over to the bedside and said she wanted to show me the films, I knew it was bad. He had some free air in his abdomen and was going to have surgery tonight. Surprisingly John and I were calm about it and felt that things would be ok. The surgeon came in about 2 hours later and explained everything to us. Sending a child, especially a newborn preemie to surgery is one of the hardest things to do! But we put our faith in the Lord and in those doing the surgery. As John and I waited in the waiting room we felt comforted and at peace. Thankfully everything turned out ok. He had a spontaneous perforation at the most distal end of the ileum. That was our best case scenario. We were thankful it was not necrotizing entercolitis. Parker now has a tiny temporary ostomy. He is doing well and should sleep well through the night. We are so thankful for those caring for him. We are especially grateful for all of our family and friends who have been praying, fasting and supporting our family through these rough days. we will continue to keep everyone posted on his status.

Surgery

John update on 13 May @ 1900:

Parker's stomach has been looking a little dark for the past couple days. His stomach has been soft so doctors were not too concern but keep an eye on it. Today the stomach got a little hard and they did a few X-ray. They will be taking him into the OR to open him up and see what is going on. He received a blessing from Amber's dad and myself and we all feel it is going to be good. We have faith in the doctors and the staff working on him. Let God's will be done.

May 12 @ 2030 Update

Amber updated on May 12 @ 2030:

Day 9: Parker is now weighing in at 940 grams! He's passed his birth weight! Yay! Had a pretty good day. Belly looked a little big, had some bile coming out of his oral gastric tube, but X-rays look ok. More X-rays tonight and labs. Oxygen levels went down a few times, so I don't think he's ready quite yet to come off the vent. We're ok with that, he will be off in due time. He continues to pull through. This little man is a fighter!

Light as a Feather

John Updated on 12 May @ 1518:

So I got to hold Parker today.  Man he is light even with him gaining some weight.  Today he was 940 grams, which is about 2.07 lbs.  I got to hold him while the nurse changed his linens.  Unfortunately it wasn't the holding as one would think; holding him close to your body or something in that nature.  It was more of cupping him in my hands and lifting him up while the linens were changed.  One hand held his entire body while in the other hand laid his sweet head and vent tubes.  I can't believe my precious baby fits in my hand but I am so grateful to a loving heavenly father who has given me the chance to be responsible for such an adorable person.

While venting his stomach for air, the nurse pulled up some bile and old blood.  The doctors are not too concerned about it as it is not fresh.  They were talking about putting him on stomach vent that pulls from his stomach every so often rather then having the nurse do it every four hours, but nothing has been decided upon yet.  He has been resting all day and looks so peaceful.  We are hoping that he continue to be able to rest so his body can grow without issues.

I posted a new video of how our nurse rotates Parker, called Time to Rotate.  It is amazing how quickly she turns him to adjust his position and makes it seem so effortless.

May 11 @ 2115 Update

Amber's Updated on May 11 @ 2115:

Day 8. Parker had a good night last night and a good day today. Weight is up to 880 grams BP finally where it needs to be. No more bleeding from the oral gastric tube. Doing well on the vent. He is breathing above the vent settings. Doctor is thinking about extubating (taking out breathing tube) in the next few days. We'll see how he does. We will probably start feedings again tomorrow. He was quite active this afternoon. Kept peeking his eyes open all afternoon. It was so fun watching his facial expressions. He just gets cuter every day! Keep it up little man! You're doing great!

Peek-a-boo, I see you!

John Update on 11 May @ 1623:

Today has been a good day for Parker.  He has been breathing well and just looks really good.  Amber will have all the medical terminology in her update later but I wanted to share about how we got to see him open his eyes.  He was moving his eye lids all day and finally we got a lot of good peeks from him.  He has such beautiful eyes!  Seeing him look up at me even for the split second that he did was amazing because it felt like he knew me.  That connection made me feel more like a dad, knowing that my son has seen my face and had heard my voice.  I am so proud of my little man and the progression that he is making.

Parker Playing Peek-a-boo with His Parents

May 10 @ 2230 Update

Amber's Update on May 10 @ 2230:

I can't believe my sweet little boy is 1 week old. This week has flown by. Continual ups and downs. Today we came to visit and heard baby boy had quite the night. His BP and HR was dropping, so they stopped his fentanyl drip and gave him dopamine. I had a feeling that fentanyl would be too much for him. His hematocrit also dropped, so he got another transfusion through the night. By this morning his BP was up. Because of the low blood count they did another head ultrasound to follow up on the brain. Results were good. The doctor said that the stage 3 on the right looks more like a stage 2. I was relieved to hear that!! They stopped his feedings last night just to be on the safe side. He had a good afternoon and then around 1600 his nurse checked his oral gastric tube an pulled back blood. We were both a little freaked out. The doctor order a STAT x ray of the belly that turned up negative. We're thinking the few doses of steroids he had irritated his belly, so he's in Zantac. Also going to get some FFP(fresh frozen plasma) to help thicken up the blood. They will do another X-ray of his belly tonight and follow up his labs. Like a said, a continual roller coaster ride. We are keeping out spirits high. We have learned to me submissive to the Lords will and have faith in Him and those taking care of our baby boy Parker. Once gain we appreciate all the support and prayers for our family! More updates to come

May 9 @ 2131 Update

Amber's Update on 9 May @ 2131:

Day 6 Parker had a good day today! But last night was not so good. His heart rate and blood pressure were high, his pain meds just weren't cutting it. So his doctor started him on a pain drip to help maintain adequate pain control. He has had a rough few days, his body needs to relax. He had a repeat ECHO of his heart that showed his PDA is still closed (yay!). He had an ultrasound of his belly that showed his aorta is doing fine (yay!). And he had an EEG that he did not like, but we got some good brain activity going on, just waiting on the results. He is still doing well on the vent, he's been taking a lot of breaths on his own. Other times he lets the vent do the work, which is fine. His labs are good today. He is doing well with his feedings. They did have to hold his 1800 feeding because the residual was too much. He has been a real trooper. John and I have been taking turns with changing his diapers. Today I got to wash his hair after the EEG. He's so tiny! It's like changing a little doll. We can't wait until we can hold him and kiss on his sweet little face!!

May 9 @ 1214 Update

Amber's Update on May 9 @ 1214:

Day 5 in the NICU. Started off with good news, chest x ray showed the right lung that was collapsing is back to normal. Adjusted the vent through the night to more respirations by the vent, which is ok. Let little Parker rest a little. Then not so good news about the follow up Ultrasound of head. Bleeding remains stage 2 on the left, but progressed to stage 3 on the right. All we can do is monitor it with another ultrasound in a week and daily head measurements. Oh the ups and downs of the NICU. On another good note we started feedings at a whopping 1cc every 6 hrs. Let's hope that digests well. We pray that the bleeding in the head will not progress any further. And hope for a restfully night for our little Parker.

May 7 @ 1117 Update

Amber's Update on May 7 @ 1117:

Day 4 in the NICU. Good news today! PDA is closed (hole in the heart) so that means he can start some feedings. It will be very little, 1ml every 6 hrs. Blood count is doing good. They will repeat the ultrasound of his head tomorrow to follow up on the bleed. His WBC are still a little low so he will need a lumbar puncture in the next day or so. He is still weaning down off the vent so that is good too. He has dropped weight 800 grams today but he has been peeing alot. Overall doing well today :)

May 6 @ 1807 Update

 Amber's Update on May 6 @ 1807:

Sitting with Parker at the hospital. He got another blood transfusion this morning. His hematocrit had dropped pretty significantly through the night. They did another ultrasound of his brain and they did find a stage 2 bleed in both ventricles (stage 4 is the worst). It is very common in micro preemies. Their vessels are so fragile. They will do another ultrasound in a few days to follow up and will monitor his blood pressure and labs. Otherwise he is doing well. Slowly weaning off the vent. He is actually doing well for a baby born at 26 weeks. We are very hopeful that he will continue to progress.

May 5 @ 1822 Update

Amber's Update on May 5 @ 1822: 

For those of you who don't know, baby Parker was brought to this world a bit early. Thursday morning I was having cramping and turned out I was in labor. Parker was born on 5/3/12 at 1125. Weighing only 2.1 lbs and 13.75 inches. He was stabilized at Nellis and then transferred to Sunrise NICU. He is intubated and has a lot of other things on board. But he is holding strong and doing well. Everyday will be different. The doctor said some days will be good and others will be bad. He will be here for a while since he is only 26 weeks and 6 days today. John and I are both doing well. Our spirits are high and we both are so calm about everything. We appreciate all the love and support from everyone!

Close up of Parker

Intro to Parker's Life

This blog if for our son John Parker Luke, whom we will be referring to as Parker.  He was born on the 3th of May, 2012 at 1125 in the Mike O'Callaghan Federal Hospital (MOFH) on Nellis AFB, NV.  He was born at only 26 weeks and four days of growth in his mother's womb since MOFH does not have a long term neonatal intensive care unit (NICU) he was transported to Sunrise Children's Hospital hours after his birth.  To all that read this blog, we will post updates on this condition, pictures and videos as frequently as we can.  We are truly grateful for your love and support of our little man and we want you to know that our Lord's hand has been seen in the reason he was born early.  We also know that the Lord's will will be done and we are accepting of what may come from this trial in our life.