First Camo!!

Every Monday and Thursday mornings I have at least 2 texts before I even make it to work ‘needing’ to know a weight. This morning Ryan weighed in at 760 grams. That is roughly 1lb 11oz. This isn’t the first time that Ryan has been up to this weight.

At the height of his swelling phase he weighed 1lb 11oz.

He looks Much different at his Current weight of 1lb 11oz! I’m LOVING how much better her looks at this weight now!

His calories per feed were increased to 25. The doctor was concerned that he missed a day having a bowel movement so he prescribed a baby lax to help his system.

Gammie surprised Mommy today and brought Ryan his First Camo!!

She found a website that sold wraps for babies as little as 1lb. I LOVE that he has a hat that fits!!

I told sent a message to Dean and told him that Ryan says he is ready for the upcoming youth hunt!

I was surprised that after weeks of a having a ‘naked’ that he didn’t seem to mind his cloths at all.

Six Weeks!

Ryan is doing very well so well in fact the doctor wrote Zero orders! He is still tolerating his feeds well. His urine has leveled off but he is still averaging the needed 2ml/kg/hr.

He has been a much happier baby now that his tummy is full!

He has always had his hands close to his face from his first ultrasound. He has given in and is leaving his tube alone for the time being . . . as long as he can have his hand around his face.

He is a sneaky little thing! Lesha stopped by at lunchtime and while we were talking I looked down see Ryan Peeking through his fingers.

He already knows how to play opossum! As soon as we looked at him he closed his eyes!

I had my checkup with my OB this afternoon. I’m healing nicely and no longer have to take Lovenox! This was as far as the good news reached however. My OB is normally a glass half full positive personality. So you can understand how difficult it was to hear her say the words that it would be ill advised to attempt another pregnancy. With my thrombophilia science says that Lovenox should have ‘fixed’ whatever had gone wrong with Jackson. We learned that there was nothing abnormal in any of the cultures/pathology from delivery.  

I knew once I was told Ryan would be delivered the 24^th that my chances of every having another pregnancy was slim. I can’t lie and say that I didn’t hope to hear that something came back that would explain what had happened. Even though I pretty much knew what her recommendation would be it is still extremely hard to hear. It affected me much stronger/worse than I expected.

For now we are left with more questions than answers. I apparently have no problem with fertility instead my problem is carrying a pregnancy past mid-second trimester. This wouldn’t be a problem except that there is no guarantee at what point I would carry to. Meaning the change of putting ourselves and family through another stillbirth is greater than any of us can stand to experience.

It hurts knowing that unless research discovers a way for me to safely carry a pregnancy to term that I will not be able to have a ‘joyful’ pregnancy.  I read a quote recently that stated the loss of a child steals the joy from pregnancy. I completely understand this quote. There are many ‘joys’ that I will never experience. I can only imagine what a foot in the ribs would feel or imagine Dean’s face feeling our child kick from outside my stomach.

I pray and thank God daily for allowing Ryan to survive delivery and thrive in the NICU. I know it is only through his grace that I was able to carry Ryan and him grow as long as he did. He is definitely our little miracle! This last year has shown us just how precious life and family is. It is so easy to take things for granted and just as easy to watch it all slip away. When this occurs, the only thing that is left is our faith. It has been at times the only steady thing that has held us together.

I just pray that God will allow me to continue to ‘keep’ Ryan.

Ryan has had a very good day today. He is back on his regular feeds and seems to be a different little man with a full tummy! His rate on the vent has been decreased to 32! He has been holding his oxygen well and is on around 22%! I noticed something new about Ryan while I was in with him this afternoon. He can now grip our finger with all four fingers AND his thumb. He is really starting to learn the use of his thumb!

Today was a special day for Ryan and Daddy!

Dean was able to hold Ryan for the first time this evening. He required slightly more oxygen during this time but other than that he did amazing!

He was curious at first and had to feel along daddy’s wooly chest. Once he knew for sure it was Daddy Ryan reached back and wrapped his hand around Dean’s finger.

It was absolutely the most precious sight!

I only got teary eyed once. I didn’t get emotional when I held Ryan but there was just something about seeing Dean holding Ryan on his chest next to Jackson’s memorial footprints.

We have had some of the best nurses during our stay! Tonight our nurse had every reason to tell us that she and the unit as a whole were too busy to hold our son. I know she didn’t have the time but she made the time to allow Dean to hold Ryan and to make the time special.

Nurse A has been such a blessing to us! While I was still in the hospital she pulled the curtain to Ryan’s room, looked at me, and told me that it was ‘ok’ to cry. She said she had been in the same position several years ago with her son and that after a full day of being strong and greeting everyone that there comes a time that Mom needs take for herself and let the tears fall. She sat and talked with me for a long time as I cried. I’ll never forget that night. Ryan was doing well but she knew the words that I needed.

Ryan has been a Fussy. . . . Fussy . . . . . FUSSY little man this evening!

His blood count was low this morning so he will receive a total of 10mls of red blood cells. They will transfuse 5mls at a time over about a 16 hour period. We were told his body should be able to better regulate/replenish his blood count once he is off the vent/oxygen.

During this time his feeds will be mixed differently. He has been taking  14mls of 24 calorie Alimentum. During his blood transfusions they allow the gut to rest and he will be getting 5mls of 20 calorie Alimentum mixed with 5mls of sterile water.  

Apparently this is NOT sitting well with our son! I’ve never seen him this fussy or inconsolable! Dean keeps saying “the boy is hungry.” Tonight he showed out to show it!

Gammie did however find the right touch and calmed our little man down.  Hopefully tomorrow his lab work will be good and Dean will get to hold Ryan for the first time!!

It just hit me while browsing Facebook. Dr. Z said MY Baby. Sometimes it doesn’t feel real. I come home to the same house as before he was born. Nothing seems to have really changed. I have to keep reminding myself to stay patient and faithful because there is a little man waiting on me to take him home as soon as he is ready.

The conversation that sparked this random thought came this afternoon. Dr. Z came to talk to us during our afternoon visit. This caught me off guard because it is not usually a good thing when the doctor sees your child for a second time during the shift. Today this was a good visit. Dr. Z was on the day Ryan had to be placed on the oscillator. He wanted to come in and give me some of the best news I’ve heard throughout Ryan’s hospital stay. He smiled wide and stated “Your baby is doing Great.” He went on to note that anytime he only has to write two routine orders in a chart that that means “Your baby is doing Great.”

Ryan is doing well. As I mentioned he had no changes to his care today. Dr. Z said that we are just waiting on him to grow. His next order of business is for Ryan to reach the 900-1000gram mark so that they can begin serious vent weaning.

Ryan was some kind of fussy this afternoon! He is requiring slightly more Ativan over the last few shifts. He hates the OETT!! It’s a good thing he isn’t strong enough to carry through with his plans. I watched him push up with his forearms and shoulders while at the same time attempting to lift his head backwards away from his breathing tube. It may be cute now but when he gets slightly stronger he will have to be watched closely or he will pull his own tube! He was so worked up at attempting to pull his tube the little vein on the side of his head looked as if it would explode!

Ryan did calm down after a round of Ativan. I hate seeing  him so worked up but it is still encouraging seeing him move all of his extremities and seem to be able to form ‘plans’ to get away from his lines/tubes.

Ryan has many nicknames. Today he lived up to his nickname of lil stinker/ lil booger! He has really started mastering the movement of his arms/hands. He loves to have his hand by his face and often he will grip his breathing tube with his hand. At first this was nothing concerning but as he has gotten bigger and stronger they now have to worry about him pulling his tubes out.

They try to give him an ‘inch’ and place a piece of fabric over the tubes to allow him to place his hand by his face as he wishes.

Today he was totally being a lil stink though and you could see it in his eyes that he was desperately trying to figure out how to get his hand under the fabric.

I’m certain Ryan will be able to do anything he sets his mind to even if it means moving mountains. He has shown great courage and determination in his five weeks we have been blessed to watching him grow and develop.

Sometimes that determination gets him into trouble. . .

 He finally figured out how to get his hand somewhat under the fabric.

I keep saying I’m not exactly sure what God has in store for our son but I know it is something special! He is one amazing little boy. I tell him daily how proud I am of him!

His feedings were increased to 14mls every three hours. They are still at 24 calories. His tummy is still soft and he is doing very well with his diapers! He had some minor vent changes this morning. His oxygen ranges from 22-24%.

He will be weighed and measured again tomorrow night. I LOVE the nights he is weighed. It is always so exciting to hear he has gained!

His nurse D and him made some special art work and surprised us with it this morning. I joke and say this is the first piece of fridge art that was sent home from his teachers. I love these little feet soo much!

Ryan is in a good place. His main goal now is to rest and grow. He needs to grow at a steady pace and his lungs need to continue to develop so that in the next few weeks he can come of the ventilator.

He was too sweet tonight. I can normally rub his back slightly and he falls asleep at this time we usually step out for the day/night. Apparently he has figured me out!

His eyes were soo heavy but he was trying desperately to hold them open and look at me this evening. I felt so bad leaving him before he was asleep but knew that the longer I stayed the longer he would fight sleep. I didn’t want my actions to cause him to become fussy and hurt his breathing.

I guess this is just another one of those ‘mommy’ things that we must learn to do.