A Good Day..

Jaxson had a good day today. He weighs 3 lbs. 5 oz.: He's gained a pound since he was born 29 days ago! <<-- He's also a month old tomorrow! Crazy...it's gone by so slowly for me, yet so fast...hard to explain.

He's now given Prilosec for his reflux, and they took him off caffein and are now giving him Theophylline, a medication used to stimulate his central nervous system to reduce the incidence of apneic episodes. They increased his feedings as well. It was working today, so I'm crossing my fingers that we have found the right combination.

I got to hold him today for over 30 minutes. He did very well, no apneas. No apneas at all for me today during my 3 hour visit. That made me very happy. He also opened his eyes a bunch today too. He's looking great.

That's all I've got for now.

Love!
Sheree

4/27

Special Person of the Day: Aunt Ashli!!! We love you! Happy Birthday!!!!

Jaxson weighs 3lbs 3oz!!!!!! YEAH! He's gained almost a whole pound since birth! Just two more ounces to go.....

Jaxson has been misbehaving quite a bit lately. I think the reflux is causing the clusters of A's and B's he keeps having. It seems like every time the nurses are busy, he stops breathing. I suspect he just can't stand for all his ladies to be paying attention to other babies. His nurses are all so wonderful, I don't blame him at all.

This kid is T R O U B L E ! T R O U B L E !

They are changing up the feedings, moving his tubes around, moving him around, trying to find the right combination of factors to keep him from getting A's and B's. It's really just a day by day thing. What works today might not work tomorrow.

Jaxson has been opening his eyes a lot more...looking around. It's another amazing thing for me to see, having seen it so rarely. Sorry for the blurry pics...it's hard to maneuver in that isolette.

We are all fed up with it at this point....the nurses, doctors, Jeff and I....It's getting ridiculous, but we have to be patient with our little guy. He's starting to catch himself more, which is an improvement. But he also turns every color of the rainbow during one of his episodes and scares everyone. We have to nudge him hard to get him to start breathing sometimes. If he keeps on like this, they'll put him back on the tubes, unless we can find the right combination to help him get over the hump. It's gotten to the point where I can't even hold him without him having 3 episodes.

I did spend the day there yesterday with him and went back last night after shift change specifically to give him a bath (Thanks Mickell for the suggestion!!). It was great to get to interact with him. I even got to wash his hair. I almost cried. Every little thing, from changing his poopy diaper, to putting ointment on his butt to touching his hands is so special to me. I wouldn't trade it for the world.

Sometimes when I'm touching him I get light headed. It's a little overwhelming when I let myself think too hard about the situation we're in. But I just tell myself this is what it is and it won't last forever...even though it seems the opposite is true, now. I find myself getting a little envious of the moms in the bay who are already getting to breast feed their babies. But, again, my time will come and it will be even more special when it does.

So, since things have really calmed down a lot, and Jeff and I are settling into a routine, things have become more manageable for us. So, I'm thinking that I'll start updating the blog about once or twice week. Obviously, when we reach milestones, reach new heights of cuteness, or experience any other drama, I will post about it. I don't want to post for the sake of posting....that would get mundane.

As always, thanks for the prayers and encouragement. We love you all very much!

Jeff, Sheree, and Jaxson!

XOXO

4/23 Kangaroo and cute pictures too!!

Jaxson weighed 2 lbs. 15 oz. today! We're almost to 3 lbs.! Great news!

Doctor says the head is growing nicely. He's grown 2 inches since birth!

He is stilling have apnea and bradycardia episodes. They are playing with his feedings, giving him more caffein, and they placed a tube that extends past his stomach to relieve reflux. Hopefully this will work. They just have to keep trying different things until something starts working for him. He has been on the CPAP for going on two weeks, so it's also possible that he's just getting really tired. We're going to have to wait and see on this.

Other than that, he's doing great. I had a great visit with him today. I got to hold him for 30 minutes kangaroo style. Afterwards, I got to change his diaper. I left it off for a minute and he stuck his hand down there and held his package. It was actually really cute. I left him on his back for a little while and he behaved nicely, so I got to snap a bunch of really good pictures. He even opened his eyes a bit! He's looking better and CUTER every day. He's just GORGEOUS!!

Jeff's folks are on their way to visit. Hopefully Grandma will get to hold Jaxson this weekend!!

Jenny Bond came to visit today as well! Thanks Jenny!!

Love!

Sheree & Jeff

4/21--More Kangaroo

Jaxson had lots of A's and B's again today. The doctors decided to start giving him feedings slowly rather than in one big bolus so he wouldn't have to struggle so hard. They also increased his caffein to help him wake up more easily. His apneas have been really deep the last few days. It's been hard to wake him up. When I got there yesterday afternoon, the change in feeding and the additional caffein were helping a lot with the A's and B's. We all would prefer to adjust these types of things rather than intubate again.

Jaxson lost an ounce and went back down to 2lbs 11 oz. But that is normal...he's been burning a lot of calories trying to breath on his own with the CPAP.

I got to do kangaroo again. The pictures are on Jeff''s camera, so I'll post those later. It's definitely helping with my milk production...amazing how that works!!! He got pretty tired toward the end of holding him. He started sneezing and fidgeting a little so we got him back in his isolette, took his temperature, changed his poopie diaper...I wiped his little tiny butt. Even that was special to me! Poop and all, I fall more in love with him every day. I can't get over how he gets cuter every day, too. He looks really healthy!!!

Here are a few pics I snapped. He looks so sweet.

4/20 Kangaroo Care

First thing: I wanted to report that I asked about his little nose. His nurse laughed and said "DON'T WORRY! We call it CPAP nose, and it will go back to normal once the CPAP is removed!". I was really very relieved to know that my baby's nose will look like it's supposed to. WHEW!!

Jaxson weighed 2 lbs. 12.5 oz.!! Three lbs. here we come! He's going to look like a giant compared to when he was born! I can't wait! He should start gaining about an ounce a day, so hopefully he will be up to three pounds by sometime next week!!!

I spent the day at the hospital yesterday. Jaxson's bay was a storm of activity when I walked in at 11am. They had just received 2 new babies, twins, that morning and all the nurses were working on them. Jaxson was chilling out in his isolette.

I shot a picture of him with a pacifier and my finger. He was sucking pretty hard. It was so cute! I'm glad he's getting the hang of it finally. It's a good way to keep the CPAP air from escaping through his mouth and it also helps him "self soothe".

I sat with him for a few hours while the nurses were busy. They came by to say hello and ask if I needed anything, but I was really glad I was there with Jaxson...even though he was passed out, oblivious to what was going on. EXCEPT, maybe he WAS aware that something was going on......

He had a bunch of brady's while I was there. I had to stimulate him to get him to wake up from the apneas. It was a little nerve racking. The nurses and I were joking that he just wanted the attention back from all the ladies!

But he is really doing very well despite those bumps!

At about 2pm, things had finally calmed down so we got to take him out so I could hold him. Again, it was so great to have him close to me. He has behaved very well all three times I've held him. No A's and B's at all. I think he enjoys it just as much as I do!! His little hand was resting on my chest, shot a picture of it. The fingers are plumping up nicely. I kissed his head about 1,000 times during that 40 minute session. AND, he opened his little eyes when the nurse went to take the picture of him in my arms!! He's so awesome!

4/19

When I walked in to the NICU today,the respiratory therapist was about to remove the CPAP and tape from Jaxson's face to suction out his mouth and nose. He even went so far as to pop the hatch on the isolette so I could get in there with Jaxson and get some pics.

His poor little nose is all smushed right now because of the CPAP....which, by the way, he keeps trying to pull off. I don't blame him!!!

He weighs 2 lbs. 11 oz. and he's doing really well. He continues to have the occasional A's and B's on the CPAP but so far he's doing well on it compared to last time. He doesn't like it though. He tries to pull it off his nose. It makes him sneeze too. It's precious!

I've finally learned some of his cues and behaviors....

When he gets turned on his back, he gets upset

He likes a clean diaper (can't blame him!)

Once his diaper is changed and he gets fed his milk, he likes to be bundled up on his belly to sleep

He likes to wiggle out of his snuggle sometimes. One of his nurses came round to check him the other day and when she opened the hand hatches to the isolette she was startled to see he had completely wiggled out of his snuggle and was hanging off the side of his bed. She told me that she took some pics with his disposable camera. We'll get to see those later. I got a picture of him today trying to wiggle out.

He is really strong. Yesterday, when Jeff and I got there, his nurse was about to change his diaper, take his temp., etc., and so Jeff and I helped hold his little arms and legs so she could do those things a little easier. He got away from us a couple of times. It was adorable!

He likes it when I hold him, I think. He has done very well both times I've held him. He makes really cute sounds, sneezes, but he sleeps in my arms.

I'm going to ask his nurse and doctor about his little nose tomorrow. That CPAP is squishing his nose and I worried it's going to make his nose different than it's supposed to be!!! Does anyone have any experience with this????????

They are turning him several times a day so he doesn't get the misshapen head.

I can't wait to see him tomorrow! Kangaroo Care again!!! Whoo Hoo!

He should start gaining about an ounce a day from now on. Looking forward to him hitting 3 lbs! Blood culture came back negative again...back off antibiotics! No more IV either!!

We are so proud of you Jaxson!

4/16/10: Kangaroo Care

Kangaroo care is the practice of holding your diapered baby on your bare chest (if you're the father) or between your breasts (if you're the mother), with a blanket draped over your baby's back. This skin-to-skin contact benefits both you and your baby. You may be a little nervous about trying kangaroo care. If your baby is very small or sick, you may be afraid you'll hurt him. But you won't. Your baby knows your scent, touch and the rhythms of your speech and breathing, and he will enjoy feeling that closeness with you. Kangaroo care can help your baby: Maintain his body warmth Regulate his heart and breathing rates Gain weight Spend more time in deep sleep Spend more time being quiet and alert and less time crying Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breastmilk production) Kangaroo care has emotional benefits for you, too. It builds your confidence as you provide intimate care that can improve your baby's health and well being. You are giving something special to your baby that only you can give. By holding your baby skin-to-skin, you will feel the experience of new parenthood and closeness to your baby. Kangaroo care is healing in many ways, for both you and your baby. Ask your NICU staff about its policy on kangaroo care. Some NICUs postpone kangaroo care until the infant is medically stable, while others use it from birth onward. Kangaroo care is safe and beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby. You will cherish this time. Resource Kangaroo Care: The Best You Can Do to Help Your Preterm Infant, by Susan M. Luddington-Hoe and Susan K. Golant (Bantam Books, 1993). August 2009 Excerpted from the March of Dimes booklet, "Parent: You & Your Baby in the NICU", written in collaboration with Deborah L. Davis, Ph.D., and Mara Tesler Stein, Psy.D., authors of "Parenting Your Premature Baby and Child: The Emotional Journey."

I couldn't wait to get to the hospital today so I could hold Jaxson. It was the best day of my life. I got to hold him for 30 mi

Jeff and I will be heading there tomorrow afternoon together. HOPEFULLY, he will be having a good day and we can do a Kangaroo session again. We will take pictures and post them when we get home. I am really sleepy now.

4/15/10: The Eyes Have It

As promised, Jaxson's breathing tube was extubated today. His doctors put him back on the CPAP. So far, he is doing well on it. I'm afraid he's going to get pooped out again and have to be put back on the tube.....but we'll see. He was breathing well on his own this afternoon when I saw him.

Even better news is that he was really trying to open his eyes today. He "looked" at me for a while. I'm not sure what he sees, and how well. His little eyes are probably not working that well right now....but it was so wonderful to see them!

Even BETTER news is that I might be able to hold him TOMORROW for the very first time....that is, if all goes well through the night and he has an ok morning (meaning that if he doesn't start back up with the A's and B's....a few are expected).

I am so excited, I can hardly stand it. If I don't get to hold him tomorrow, that is ok. But I really hope I can!!

We are really looking forward to the day when we get to see his little face without some sort of contraption on it. But we sure are glad these things exist, so we can bring him home someday.

He sure does seem to have a lot of girlfriends already. His nurses think he's a really cute little guy! But we knew that!

With all the good news lately, it's hard to imagine anything but good news from now on....but I want to be a little cautious. BUT, today was another great day!!!

We love you Jaxson!

Mommy and Daddy

4/13/10: 2 Weeks Old!!

Jaxson is having another great day!

The heart ultrasound turned up nothing in terms of problems....benign!!

He was weighed last night at 2lb. 9oz. He is doing well on the breathing tube, but they will extubate Thursday and put him back on the CPAP. The doctors prefer not to have a tube going into the lungs because there is always a chance of infection with something that invasive.

If Jaxson can handle being on the CPAP for a few days without having any A's and B's, hopefully I'll get to hold him pretty soon.

He has been taken off antibiotics and they have increased his feedings to 13 cc's (started at 2 cc's).

I visited him this afternoon and he opened his eyes for a little bit. I talked to him and told him how proud I am of him and how much we love him. He is such a handsome boy. I can't wait to see what he is going to look like. I think he has Jeff's nose. Definitely my eyes, so far. It's hard to tell with all that tape on his little face. I'm sure he'll do a lot of changing in the coming weeks.

He was given an IV this afternoon and given blood. Because they take blood daily for testing, they were just replacing some. As always, they will continue to do this to check for infections.

I will be there again tomorrow and try to get some better pictures.

I want to give a special thanks to everyone who has sent gift cards and those who are cooking and delivering meals to us this week:

Vanessa and Chad Rankin

Hana Sumbera

Clara and Eric Mickellson

Jessica and Anthony Kraybill

Amanda Benson

Dave M.

Roel Gonzalez and Clay Smith

Greg and Ashley Mack

Jeff's Maw Maw and Paw Paw

My Aunt Mary and Uncle Rudy

You guys are life savers! Jessica, thanks for setting it up. If I left anyone out, someone let me know.

I have to thank my parents Jo and Randall, Jeff and his parents Kathy and Bill, Jessica, Ronda, Ann, Ashli, Jenny and Doug for all the food they delivered to me while I was laid up in the hospital.

We are still so overwhelmed by everyone's generosity...and I know I keep saying it..but it's really important!

4/12/10

Jaxson is having another great day. No A's and B's. I just heard from his doctor and he has gained another ounce, 2lbs 6 oz today. He is on room air, they are increasing feeds, and they will extubate* his endotracheal tube (ET Tube)** later this week and see how he does back on the CPAP***.

The only issue today was that the doctor heard a murmur in Jaxson's heart. It's called a PDA****. They will be performing an untrasound on his heart either today or tomorrow to check it out. The doctor will either call me later today or tomorrow to discuss it, once he sees what we are dealing with. I will post when I find out more. The chances of it being something really serious are only 1%. Typically, it's a condition of prematurity and is not a major concern unless it persists.

Room Air The air we normally breathe, which contains 21% oxygen. When supplemental oxygen is given for respiratory problems, it is in concentrations higher than 21%.

*Extubation Removing the Endotracheal Tube (ET Tube) from the baby's windpipe.

**Endotracheal Tube (ETT or ET Tube)Tube placed through the mouth or nose into the throat and the child's trachea (windpipe). This tube provides a secure pathway through which air can be circulated to the lungs.

***Continuous Positive Airway Pressure (CPAP) Supplemental oxygen or room air delivered under pressure though either anendotracheal tube (tube that goes directly into the infant's lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator.

****Patent Ductus Arteriosus (PDA)The ductus arteriosus is a blood vessel connecting the pulmonary artery and the aorta. Before birth, this vessel allows the baby's blood to bypass the lungs because oxygen is supplied by the mother through the placenta. The ductus arteriosus should close soon after birth. If it does not, it is called a patent (open) ductus arteriosus, or PDA. A PDA may be treated either with medication or surgery.

4/10/10--11 days old!

Whoooo Hoooo!!

Our boy is doing very well today, so far. He has gained 4 ounces this week. He's up to 2 lbs. 5 oz., which was his birthweight!! This is the best news I've heard since day 1.

We are looking forward to him gaining and keeping some additional weight in the coming weeks.

Additionally, he has not had any A's and B's since yesterday (as of about 9:00am this morning). The sooner we get that under control the sooner we will be able to hold our son for the first time. God, please let us have this soon. His Doctor said he thinks that he was having lots of A's and B's because he was getting really tuckered out, not because he was fighting an infection.

His blood gases* were drawn this morning. Normal. All additional blood tests looking for infection have come back NEGATIVE!!! His color continues to look good.

He is taking 3-cc's of MY MILK. The doctor is going to increase his feedings to 5 per day. Great news!!! If we can keep this going, it will be great. I'm eating as much Omega 3 Fatty Acid and DHA as I can and taking supplements to enrich the milk.

Jeff and I will be visiting and delivering milk this afternoon. I can't wait to see him. Will take some pics and post tonight.

No doubt, all the prayers are working. Thanks again everyone for the support and please continue to pray for Jaxson. We are having a great day today...but he's not out of the woods yet.

Much Love to All,

Sheree & Jeff

*Blood Gas A blood test used to evaluate an infant's level of oxygen, carbon dioxide and acid. This test is significant because it helps to evaluate an infant's respiratory status.

4/9/10 Update

Hi Everyone,

Not much to report today. Jaxson is busy resting. Jeff and I are going to see him tomorrow morning.

He got a PIC line yesterday after PawPaws' and my visit (new IV that replaces the ones going through the belly button where they have been drawing blood and giving medications. It usually goes into the arm or leg). This happens with the preemies and babies, the remainder of the umbilical cord finally goes away to reveal the belly button. I'm looking forward to seeing his little button.

They did another blood culture yesterday...they get a preliminary report tomorrow, but the actual results will be ready in about 3 days. This will continue the entire time he's there, I think. If they end up taking too much blood, he'll have to get a transfusion to replace it, but there hasn't been discussion about that happening, so far.

He's still resting. He's doing well...breathing on his own and getting help when he forgets. He's having less A's and B's. I'm sure there will be more adjustments made, but for now, what they are doing seems to be working well.

Sheree

Some Perspective

Jaxson holding my finger....You can see how tiny he is.

He had a good day today. One of his Doctors called me today and said that they did another ultrasound on his brain to check for bleeding. They grade this on a scale from 1 to 4. For grades 1 and 2, they don't worry about it...the tissue will absorb the blood and there is no intervention done by the doctors. However, for grades 3 and 4, we would have some severe and possibly permanent problems. So, obviously, we don't ever want to see a 3 or a 4.

Jaxson had none again. Good news.

They were concerned this week because he's been experiencing lots of A's and B's. There are typically three reasons why a baby will have these:

1. Prematurity. Just not developed enough yet to remember all the time to breathe. This should improve with age. Also, they get tired and worn out and forget.
2. Infection. They are constantly taking blood and mixing it with a solution that will cause any bacteria or fungus to grow up in it indicating that there is an infection in the body. The infection, if any, will be treated with antibiotics.
3. Reflux. The stomach isn't handling food and some is coming up causing apneas.

Because Jaxson is already on antibiotics, they are not finding infection. They will, however be taking him off pretty soon. There is always a chance that he will get an infection. If he does, they should be able to catch it and treat it.

The doctor told me this morning that looks, in Jaxson's case, to be that he is just really young and premature. They will continue to test for infection. They have put him back on the nasal tube ventilator so that he can get some rest. Having A's and B's makes babies tired. Being on the CPAP makes him tired. So, they are holding feeding (he is still get IV nutrients) for a couple of days as well to give him a rest.

Today, he was sleeping and looked very restful. His color looks lovely.

I held his hand with my finger and he also did something quite funny with his finger once I put his hand down.....Picture number 1, above. That's my boy.

All and all, it was a good day. It makes all the other 'not so good' days go away.

Fiesty Baby!!

My mom and I went to the NICU yesterday to deliver milk and visit Jaxson. He had been experiencing lots of A's and B's through the night and that morning. Again, to be expected, but none the less upsetting.

The NICU Roller Coaster ride from Hell in a Handbasket.

Jamie, his nurse for the day seemed a little uneasy, which made me uneasy. Sometimes I get the feeling that they aren't telling me everything. Then, I realize that my hormones are surging and raging and that I'm being paranoid. The feeling of helplessness is constantly there, like a dull headache that just won't go away. I would prefer a sharp, intense stab that comes all at once.

Jamie removed Jaxson's "headgear" so we could see his face. He usually has on his "sunglasses" to protect his eyes from the bilirubin* lamp.

Jaxson got pretty annoyed when Jamie started moving him around. He most likely overstimulated. He started to cry. It was the sweetest, cutest, saddest thing I've ever heard. He was really ticked off!! He fussed for a while. I had mixed emotions about it. On one hand, I loved hearing his tiny little voice and on the other, I knew he wasn't happy and that made me feel all the more helpless. My natural instinct is to pick up my child and hold him until he feels better. I can't do that and it kills me!

Jamie explained that they actually like to see the babies get riled up and move around...It's a really good sign that they are not getting sick. The babies who just lie there and do not respond to stimulation are usually the ones who are picking up or have an infection. This made me feel better and proud of Jaxson because he is doing all of the things the nurses and Dr.'s WANT him to do! He never ceases to impress me...really. He is a fighter.

I put my hands in his incubator and he grabbed my finger with his tiny hand and gripped it until his little nuckles turned white. I wonder if he knows it's me. I wonder if it is comforting to him. I wonder if he hears my voice and recognizes it as familiar. I wonder about lots of things that I don't have answers for.

I do know this: My baby is so damn cute!!!!! I adore him. I can't help but visualize him here at home, doing all those cool baby things that babies do. Experiencing all of his firsts with him and showing him how it's done. When he comes home, I'm going to pretend that his being in the NICU was the equivalent to his still growing in my belly.

*Bilirubin Yellow chemical that is a normal waste product from the breakdown of hemoglobin and other similar body components. The placenta clears bilirubin from the fetus's blood, but after delivery this task belongs to the infant. It usually takes a week or more for the newborn's liver to adjust to its new workload. When bilirubin accumulates, it makes the skin and eyes look yellow, a condition called jaundice.

Much Love,

Sheree

A's, B's and C's in case you were wondering......

Because Jaxson is experiencing Apnea/Bradycardia, I wanted to throw up a definition so that we all know what is meant by A's and B's. At present, this seems to be the only problem we are having. It will be a while before they are able to do vision and hearing tests (usually done before the infant goes home).

Jaxson had several incidences both last night and this morning with his A's and B's. It is to be expected at this point in his development.

Jaxson is one week old today. God give him strength to endure the next 3 months as well.


Apnea Cessation of breathing lasting 20 seconds or longer. Also known as an apneic episodes or apneic spells. It is common for premature infants to stop breathing for a few seconds. They almost always restart on their own, but occasionally they need stimulation or drug therapy to maintain regular breathing. The heart rate often slows with apnea; this is called bradycardia. The combination of apnea and bradycardia is often called an A&B spell.

Apnea gradually becomes less frequent as premature infants mature and grow. There is no relationship between apnea and sudden infant death syndrome (SIDS).

Bradycardia (“Brady”) An abnormally low heart rate. Bradys are usually associated with apnea in premature infants. During these spells the infant will stop breathing for at least 15 seconds and the heart rate will start to slow, also referred to as an "A&B spell." Gentle touching or other stimulation almost always restarts the breathing and increases the heart rate. Medications (theophylline or caffeine) are often used to treat these spells in newborn babies.

Continuous Positive Airway Pressure (CPAP) Supplemental oxygen or room air delivered under pressure though either anendotracheal tube (tube that goes directly into the infant's lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator.