The Good News:
Eric is currently at 18.5 lbs and is 27 inches long. He is hitting his milestones pretty regularly and is on track for his adjusted age.

The Bad News:
He is still gagging. The constant gagging has not allowed us to start him on solids. It has also loosened up the nissen fundoplication. The nissen is what keeps him from throwing up. He has thrown up three times since the MIC-KEY was put in. It was building up to it before that time. We have an appointment with the surgeon in 2 weeks. Somehow, we need to get the gagging under control, otherwise this will keep happening.

Eric is also back on the Prevacid for the acid reflux. With the opening in the esophagus back open, it has come back as well. We will also need to keep him slanted again.

Other than the eating issues, there are no other problems. It is just this last hurdle that we have to overcome.

Eric is still having problems eating and it is getting worse. Eric went down from 20 oz of breast milk a day to 15 oz. This situation is considered critical. Eric should be eating at least 30 oz a day. When he was weighed, he had only gained 1.5 oz in 25 days. Cris and I have tried everything possible, but Eric refuses to eat and will throw up if we try to force him.

We took him to see another pediatrician (Dr. D) today that has a great deal of experience with preemies and was recommended by our developmental nurse. We will still need to stay with our old pediatrician (Dr. M) because the RSV shots are really hard to set up. So we will wait until after the shots are done with to say goodbye to the Dr. M. Dr. M is a good doctor, but he is just not experienced enough with preemies and Eric needs to see someone who is more specialized.

Dr. D believes Eric may not be digesting his food quickly enough. This is why we never know if Eric is hungry and partly why Eric has reflux. The food is staying in his stomach too long and not being digested. Therefore, Eric still thinks he is full. Dr. D has started Eric on 2 new medicationsThe first medication will help Eric digest faster. It will take about 2 days before we see results. The second will help with the reflux and results will take about 2 weeks.

If this does not work, Dr. D will send us to a Gastro-Intestinal specialist. Worst case scenario, Eric will get a G-tube that connects directly to his stomach. It is an invasive procedure and we would like to avoid it as much as possible.

Inspire - Inspire connects patients, families, friends and caregivers for support and inspiration...

Prematurity.org - Preemie Baby / Preemie Child / Preemie Parent Support

CafeMom - has several groups for supporting preemie mothers and the special problems that come with it.

Preemie Parenting - A comprehensive list of offline and offline support groups

Totally Her interviews Kristen, the mother of a 36 weeker. Her problems began at 23 weeks. Her son was a twin whose brother died in the womb.

I accidently deleted all of my links when I put in a new template. Yay! for no backups!

http://www.nurtureplace.com/ - preemie clothes and toys

http://www.mykidsinspiration.com/shop/index.php - scrapbooking with NICU items

http://www.desertdoulas.com/postpartum.html - doulas to help with postpartum (Tucson area)

http://www.askdrsears.com/default.asp - answers questions regarding baby care

http://www.ambybaby.com/ - the only bed Eric would sleep in!

http://www.llli.org/ - La Leche International, breastfeeding support

http://www.wholesomebabyfood.com/ - make your own baby food

http://www.avababys.com/servlet/StoreFront - preemie clothes and toys

http://www.mammasmilk.com/ - baby slings, also good are Hotslings and Baby Bjorn

Best breastmilk storage bags are from Lansinoh. Don't forget their nipple cream!

Breast pump - I would recommend renting the hospital's breast pumps in the beginning until your milk supply is stable. It is usally only $35/month. It can handle the everyday pumping better than anything else out there. Eventually, we purchased the Medela Pump-In-Style Advanced. Don't bother with the cheaper ones if you have to pump everyday. They will just die quickly and cause low milk supply. The Medela PIPA is the closest you can get to the hospital-grade pumps.

Expecta - Research has shown that Omega-3 (DHA) is very beneficial to newborns and especially preemies. Girl preemies will benefit the most, as some boys do not respond to it. This is for the mother to take and it comes through in the breastmilk. While it could be other factors, I am positive this is one reason why Eric does not look like a preemie and doesn't have as many issues. Expecta helps with brain and eye development and is from a non-fish source.

http://www.breastmilkproject.org/index.php - International Breast Milk Project. If you have an oversupply of milk, you can donate here. They turn most of the donated milk into a milk fortifier and donate the rest to babies in Africa.

http://www.hmbana.org/ - for donation and for mother's with little to no milk supply who would like to give their babies breastmilk. It is expensive, but some insurance companies cover the cost.

http://milkshare.birthingforlife.com/ - MilkShare is not a Milk Bank. We are simply an informational resource to help you learn about milk donation and to connect families who can help each other.

http://www.preemiesrus.com/catalog/ - preemie clothes and toys

The Developmental RN has come and gone. She is the one who evaluates Eric and decides if he needs to see a specialist. Since Eric is having serious issues with his eating habits, DevRN is going to start the process of Eric seeing a feeding specialist. This person will help Eric eat better and overcome his hyperactive gag reflex.

We had inadvertently started the process already when we purchased the vibrating teething star. There is also a vibrating spoon that we can purchase that will help. Also, because Eric is teething early, we have been massaging his gums with a baby toothbrush that fits on your finger. The point is for Eric to get used to having things in his mouth so that when we get to the solid food stage, we won't have so many problems.

The problems stem from having been intubated. This leads to the hyperactive gag reflex and the oral aversion. Oral aversion means that Eric dislikes anything in his mouth and will avoid it when he can. This would include the bottle and breast. If untreated, it will lead to texture aversion where a child is unable to eat certain textures of food. This can lead to a lifelong issue. I've finally gotten his father to eat vegetables and fruits, even somewhat spicy foods. I really do not want to deal with another fussy eater!

For Eric, it is not just a matter of calories. It is also a matter of hydration. Since he only eats about 20oz (on a good day!), when he is sick or teething, he can drop down to 14 oz. Continued low feedings can lead to dehydration and another ICU visit.

These are the tips I was given by the EIS Development RN:

1. Tap around the mouth with a finger or your mouth (kisses).
2. Use a vibrating teething star.
3. Start your child with a vibrating teething spoon. This is not for feeding but to get your child used to something in his mouth.
4. Make a blanket with several ribbons of different textures. The ribbons should only be and inch or two long. This is to expose your child to as many different types of textures as possible before solids are introduced.

Today this Miracle Child would be 21 years old. To put the story in even more perspective, Eric was born at 24 weeks and had a 20% chance of making it and he was at the threshold of viability (the ability to survive outside of the womb). Most preemie books do not even list anything below 23 weeks.

So, after the pain and drama of thrush, poor Eric has a new problem: TEETHING. I guess the little guy just wants to do everything early! Thanks Sunny, for your help diagnosing it and your advice. The teething tablets are working pretty well so far. I'll freeze some washcloths tonight for him.

He's back to just breast milk. The experiment with rice cereal and yogurt, failed miserably and we quit after a couple of days. Eric has a serious gag reflex and we never knew what would trigger it and cause him to throw up. It is better for him to be small and let him eat at his own pace, than to try to supplement and have him not grow at all because he is throwing it all up. I don't mean just a bit of spit up either, I'm talking everything that is in his stomach.

Eric is pretty stubborn and will let you know what he does and does not like. He had plenty of people shoving things down his throat, pricking him with needles and other atrocities in the beginning of his wee life. Now that he has a voice, he has decided he has had enough of all of that nonsense and he's not going to take it anymore!

You should see his face the moment we step back into UMC. He knows where he is and just hates the world until we leave. It doesn't help that his blood gets drawn each time either. Last time it took 3 nurses to hold him down while a 4th took his blood. As for when we went to see the NICU Santa, forget that! He would not smile at all, not even for the nurses that had taken care of him. However, the nurses were happy to see him and some posed for pictures with him.

During labor, the NICU doctors and nurses had set up a warming bed for Eric. When they finally let me push, Eric was born after only 3 pushes. He was born still and had to be resuscitated. He cried almost immediately afterwards. The NICU staff wrapped him in cellophane so that he would keep warm and rushed him to the NICU. I was given a brief glance of him before they took him away. Since they needed to get him to the NICU as fast as possible and I was still in the last part of labor, they tilted us both up so that I could see him. I just broke down in tears seeing this baby, the tiniest I had ever seen. It is hard to describe the fear and sadness that overwhelmed me.

Cris was able to go see Eric after two hours. He used my cellphone to take pictures of him for me since the staff didn't want me moving just yet. Eric was bruised from head to toe.

The nurses finally decided I was in good enough condition to leave my room after several excruciating hours. I was put in a wheelchair and rolled out to the NICU with an IV in my arm. The nurse let me kiss Eric's tiny feet although Cris was hovering nervously the entire time I did it. It is very sweet how quickly Cris became so protective towards Eric. At the time however, I was annoyed by him refusing to let me touch Eric even though the nurse said it was okay. I needed to touch Eric, to reassure myself, to make a physical connection. Unfortunately, with all of the drugs inside of me, I wasn't able to hold him. My whole body was shaking so bad I could not even walk. It would be another month before I would finally be able to hold Eric in my arms.

I couldn't sleep that night. My mind just wouldn't shut down. I was numb and dazed. I had no idea how I would manage to find the strength to get through this.

The next day after Eric was born, we called our friends and family and let them know. We decided to treat Eric's birth as a celebration, as a reason for joy instead of fear and worry. Our friends Scott, Jackie and Erica came while I was in the hospital and helped me to celebrate my first Mother's Day with balloons and flowers. The next day, on Mother's Day, Cris's family came to visit Eric. I was in the hospital for almost 48 hours so that they could monitor me. They let me stay in the 8th floor instead of transferring me to the 7th, which is what they normally do. The 8th floor was where Eric was and I wanted to be as close to him as possible.


Leaving the hospital was extremely hard. I had to put my faith in people that I had never met. I had to trust these strangers to take care of the most precious thing in my life. The experience was just too weird. It was hard to wrap my head around having given birth, but no baby to bring home. Life was just so off-kilter and every once in awhile, I would catch myself still talking to my stomach, to the baby that was no longer there. The only thing that made it real was the pumping of the breast milk. I did it religiously every 3 hours. It was the only thing that I could do for Eric. It was the only thing that kept me from feeling so helpless.

For Cris, it was donating his blood and going through all the red tape to make a direct donation. These times were very hard on Cris. I could make milk and spend the whole day with Eric. Cris would feel so helpless. He couldn't do anything to make things better. Cris received most of his updates on Eric second-hand. When he was at the hospital, I made sure that Cris would be able to hold Eric as much as he wanted to. Cris would try and give him back to me and I would have to remind him that I was able to hold Eric all day. It was his turn now. Even now, Cris takes every chance to hold Eric in his arms.

For the 109 days that Eric was in the hospital, we never missed a day. We made sure that he always knew that he was loved and never alone. Cris managed to take a couple of weeks off after Eric's birth. When he had to go back to work, he would drop me off and then pick me up after he was done working. Usually we would try to get there early so Cris would have an hour with Eric at the least. The days that we didn't get there early, we would stay later at the hospital, after Cris got off of work, so that Cris was able to get his "Eric fix". There were many times we did not get home until well after midnight.

I'm still amazed that we survived this. There were days when both Cris and I just wanted to curl up in a ball and just pretend none of this was happening. But we got up everyday and went to the hospital. It was never an option not to. I'll never understand the parents who left their babies in NICU until they were done "cooking", never once visiting. It was probably easier for them not to get in too deep until they knew for sure their babies were coming home, but Eric stole our hearts the night he was born. There was just something so deeply precious about him. If Eric could fight so hard to survive, to constantly be poked and prodded, to live in the noise and organized chaos that is the NICU, the least we could do was be there for him. To give him touches that weren't painful, to sing and read to him, to hold him and comfort him, our job was easy compared to his.

To those who have asked how we managed to find the strength, I still don't have an answer for you. We just got up every day and went to the hospital. There were days that nearly broke us and there were days that made it all worth while, until finally there were more good days than bad. It really is an emotional roller coaster to have a child in NICU. It is one of those things that puts you through the fire and tempers you. It colors your perspective and changes everything. It makes certain things seem so trivial and others so precious and bright. It makes you aware of the smallest miracles and you never again take anything for granted.

Little Wookie is sleeping peacefully on my chest at the moment. Today's excitement must have worn him out. It's times like this when I get stupid and think I may actually want to have another child again. It will be a couple of years from now of course. Before, I just could not see it. Pregnancy was a completely miserable experience. The only good time was when I found out I was pregnant. We had been trying for 7 years. I had been told that I would not get pregnant without lots of medical intervention. Cris and I decided on the adoption route instead. We had finally gotten to the point where we were setting up the baby room, and getting the house ready for a home study, when we found out.

My period wasn't starting and I knew from prior experience, the best way to start it again was to do a pregnancy test. So here I was, waiting for another crushing disappointment, when the stick showed me pregnant. I showed it to Cris and we just stayed in shock for the rest of the night. It was a nice positive, no-mistaking response. The second one after that, same thing. Cris wouldn't believe it until we went to the OB/GYN and she confirmed it. I must admit that I was afraid this one would come out negative, dashing all of the hope and joy that I had just started to let myself feel.

Things were not to be easy. At exactly 7 weeks of gestation, the troubles began. My body tried to miscarry my little guy, twice, sending me to the ER each time. Each time, the doctors were expecting me to lose him. I did get a picture of Eric at 7 weeks old with his little egg yolk sac right next to him. He was the size of a blueberry at the time. I ended up on bed rest for the first 3 months trying to keep Eric inside.

The doctors think that it was the blood from the attempted miscarriages that caused Eric to be a preemie. It was probably a good thing in the long run for him, since the bleeding was acting as an irritant, and could have eventually separated the placenta from the embryonic sac. One of the doctors told me that is probably why Eric was so tiny, he wasn't getting enough nutrition with the placenta beginning to separate. Other preemies born at 24 weeks were at least 1 lb 3 oz, but Eric was a smidgen under a pound. I shudder to think what could have happened if he had gone full term. There were so many clots behind the placenta, that Cris told me he was "scared shitless. Omigawd, not only am I going to lose my son, I am going to lose my wife".

As for the debilitating pain, the doctor at the birth said that I had a tilted uterus. I'm not even sure how that is even possible. I had planned on talking about the pain to the OB/GYN on the next visit. What I did not know at the time, was that my water had broken on Monday, a very slow leak that we thought was merely pregnancy incontinence. On Thursday, very mild contractions started. Since everything else was early, such as Eric kicking at 15 weeks, I merely thought it was Braxton-Hicks. It went away after a couple of hours. Friday at around 2 pm, they had started up again. This time they were so painful and coming so frequently, Cris called the OB/GYN and she immediately sent us to the birthing center.

At the birthing center, they put me on a monitor to check if I was actually in labor. The monitor didn't show anything, not even a blip. Cris started timing when I said I was having contractions and they were 3 minutes apart. Still, the monitor showed nothing. Finally, after about 40 minutes, they did the finger test to see how far I was dilated. I was 3 cm. The birthing center went into emergency mode. Cris heard a nurse say that there was no way they were delivering a 24 weeker. Northwest Hospital is a Level 2 hospital. I needed a Level 3.

They filled me up with Magnesium Sulfate at Northwest trying to stop the labor. Magnesium Sulfate has the side effect of making you feel like you are being microwaved. At UMC, they gave me more MS. They did another check on Eric's status. The reason Northwest monitors couldn't detect the contractions? There wasn't any amniotic fluid left. I was given a steroid shot to help with developing Eric's lungs, increasing his chances of survival. Usually a person needs 2 shots in a 24 hour period. The MS wasn't working, they tried Morphine, as Morphine can also stop labor or at least slow it down long enough for me to get that second steroid shot.

My body wasn't ready for labor, it had never had the chance to prepare for this. The stress of the birth, both mentally and physically, was exhausting me at this point. The room's temp was set to freezing since I was burning up with all of the MS inside of me. I knew he was coming and it was breaking my heart. I was losing the child that I had prayed for. To come so far, only to have my body betray me. I had felt him move inside of me. I had seen him on the ultrasounds. I knew he was a boy. For godsakes, we had named him. He was a person, not just some abstract thing. After an Epidural, which did not work, Eric was born that day at 10:14 pm.

Cris and I talked about it before the doctor arrived. What would we do if Eric came today? Should we ask them to try and save him? It was probably the hardest decision I had ever had to make. Before that day, both Cris and I had read an article about babies who were destined to die and articles on preemies having so many medical problems that their quality of life was extremely poor. It was the article about the preemies destined to die that won out. In the article, it talked about how parents chose to save their children, just to have a chance to say goodbye.

So we decided, whether it was a lifetime or just a day, we wanted as much time with Eric as possible. Eric was born at 450 grams. The cut off weight for resuscitation is 500 grams. The attending doctor did not want to resuscitate Eric. She thought it was hopeless to do so. Eric's chances were 20% for survival. She was glad that Eric proved her wrong and chose to live by his own rules, instead of what is says in the medical books. Even coming home 1 week before his due date, is against the rules. Most 24 weekers stay in the hospital weeks after their due date, which is one of the reasons they would never give us a date for when he was coming home. They thought Eric would be in for so much longer. After all, that is typical for 24 weekers.

It is in awe, triumph and a deep profound love, that I glance at my sleeping angel. His face is so sweet and peaceful. He doesn't know yet how wondrous he truly is. Cris and I have become so much closer watching our little miracle grow. Sleep-deprived and emotionally drained, we hold him closer, thankful for every moment.

Understanding Preemie Parents - This is a great article that I found and hope you will take the time to read.

I have noticed a misconception among those who have seen Eric in person or in just his pictures. There is a tendency to think that Eric is a normal healthy baby and won't have any problems in the future...that now that he is home, he will be a normal 3 1/2 month old, only smaller. Unfortunately this is not the case. A preemie usually does not catch up to their peers until about 18 months or more. Usually a preemie will need physical (PT) and a occupational therapy (OT). The OT/PT areas of assessment are the oral, fine and large motor skills that Eric needs to develop.

They will also check for any delays and for cerebral palsy. Right now these are our biggest concerns. Even though Eric's brain hemorrhages were minor, they can still influence Eric's later growth and development. Micro-preemies such as Eric, are at high risk for CP. Research has shown that developmental problems can appear later, especially for micro-preemies and extremely low birth weight children. Just because a Eric has "caught up" now doesn't mean that he will not have any problems later.

It is bad enough that I couldn't be pregnant long enough and now I will have to watch my son struggle with tasks that other children don’t even blink at. It is another waiting game to see what other problems he might have to endure in the future. This is not to say that we will love Eric any less if he is considered less than perfect by society's norms. We think Eric is perfect and wonderful and nothing can lessen our love and delight for our precious miracle. He is our greatest joy and biggest inspiration. If anything we love him enough to not put our heads in the sand and pretend nothing is wrong or can go wrong. By being diligent in his care, we are increasing his chances at a more "normal" life.

Micro-preemies are considered "at-risk" children and we have accepted that Eric will be so for many years. We will be putting our son in OT/PT because there are subtle clues that we could miss, but that the therapists will recognize as potential issues. We are hoping that he continues to progress well, but in the event that they don't, we would like any issues to addressed as quickly as possible. It is reassuring that there are so many resources out there.

It is just one more thing to be aware of. It will not be an easy road at all times, but Cris and I were aware of this when the hospital asked us if we wanted them to resuscitate Eric when he was born. It may not always be easy, but it is always worth it.

He has also had hearing test and it looked to be normal. The only thing we are waiting on now is the eye exam.

PS. I fixed the comment section so it will no longer make everyone go through a validation process. Thanks for bringing that up to me Eileen!

Eric made significant progress yesterday. He gained 2 oz and is now 5 lb and 7 oz. Since he is doing so well on the nasal cannula, they lowered it from 1.5 to 0.8.

The SNS is working out well. We decided to just do baby-led feeding where Eric decides how much he wants as opposed to upping it little by little. The day before yesterday, Eric really wasn't that into it. Yesterday, he decided to surpass expectations. He was able to down 40ml of the 45ml for the first feeding, too tired the second, and then 35 for the third.

One of the reasons that he is having problems, very common in preemies and sometimes in terms, is that he needs to learn how to suck, swallow and breathe and the same time. He is starting to get the hang of it. It just takes practice and patience. Later on we will re-introduce the Adiri bottles, to be used while we are not there. Adiri bottles are specially designed to prevent nipple confusion and help with nursing. This way Eric will be taking all of his feeds by mouth.

1. Fear - Nothing has ever scared me so much. Fear of the unknown, uncertain of the future, afraid when things are going well because they can always get worse. Afraid to hope.

2. Helplessness - In the beginning, before I got used to them, I would look down at my son. All of those tubes and wires coming out of him. I would just burst into tears. It broke my heart to see him that way. It is hard to stand back and watch others mothering your child, knowing more than you what is best for him.

3. Patience - Waiting, waiting, waiting. Waiting for Eric to have a good day so I can touch him. Waiting a month just to hold him. Waiting for him to breathe again. Waiting for his heart rate to go up. Waiting for them to move from the ventilator to CPAP to nasal cannula. Waiting to take him home. There is nothing to but wait. Growing babies can't be rushed.

4. Love - Spending every day with my son, touching his little toes and feeling them curl into my fingers, those are the moments I lived for in the beginning. Even now, I just need to hold him and feel his body close to mine. It reassures me that this isn't forever.

5. Frustration - 2 steps forward, 1 step back. Rinse, lather, repeat. It is a roller coaster ride of the emotions.

6. Gratitude - Every day is a blessing that my child is alive and is doing well in the NICU. Since I have been there, 2 babies have died, many have had setbacks and need major surgery, others aren't progressing very well. I know a few whose lives hang in the balance even now. It makes Eric's setbacks easier to deal with.

7. Happiness - Eric smiling when he is asleep. Feeling his hand wrap around my finger. Eric learning to reach for me and crying to be held. All of these tiny moments are cherished memories of a child who shouldn't be.

8. Awe - It is amazing to look back at the pictures of Eric. From less than a pound when he was born, to 5 pounds and 1 oz, as of today. He has fought so hard for his life and to be where he is now. He is amazing to me.

9. Hope - Finally getting that feeling that he could come home, that someday, instead of leaving him at the hospital, he can home with me this time.

10. Living in the moment - When we got the prognosis of Eric only having a 20% chance of living past the week, Cris and I decided that we would take each day as it came. We took picture after picture. No matter what came, we would cherish this day.

11. Strength - I have learned that even in my weakest moment, I am still stronger than I ever thought I could be. Watching Eric struggle and fight, keeps me strong. He keeps me going on the toughest days, smiling when I want to cry. How can I be weak, when he is doing all of the work? Eric is my joy, my inspiration, my hero.