Ryan has had a very good night/ day. His edema has gone down considerably. The nurse told Dean that his weight of 1 pound 7 ounces should be mostly baby weight instead of edema!!

Ryan received a new feeding tube today. This tube goes just below his original feeding tube and sits just beyond the stomach. The doctor decided to use this tube to feed Ryan because it causes less stress and eases the transition into feeding. Ryan tolerated his feeds well when they originally started but it took too much of his energy and his kidneys decided that they should take a break from working. He will get 0.1 ml/hr of breast milk each hour as a continuous feed. So far this evening he has continued to make good urine AND has tolerated his feedings. When I changed his diaper this afternoon he had his first stool!! This tells us that the tube feeds are stimulating the gut the way that they should! (he was very ticked off during this diaper change but Mommy could not let the sticky stool go without cleaning it thoroughly)

When we arrived at the hospital this afternoon Ryan was on a mission! He was absolutely determined to get his little thumb into his mouth! He was never able to get his thumb in his mouth due to all his tubes but it was the cutest thing to watch!

Dean seems to think that our little man will be a snorer. He is intent on sleeping with his mouth wide open!

We found the most adorable onesies at BRU today! I can’t wait until I can show pictures of our little man all dressed up. He has been able to take a step further….He can now be wrapped in a blanket!! Gammie made him this ducky blanket. He seemed to enjoy it!

I almost forgot! Ryan opened his left eye today! He is working hard on the right eye! It should be any day now!!

Jesus Loves Me

Jesus loves me

This I know

For the Bible tells me so

Little ones to Him belong

They are Weak

But He is Stong!

I’ve had children’s bible songs in my head all day long. A very sweet family in our church made Ryan a cover for his bed. It has his name on one side and the phrase “precious in His sight” on the reverse side. I absolutely LOVE the saying. When we lost Jackson one of the many things I kept thinking that I would never get to do with him is sit in the armchair rocker my grandmother gave me and sing bible songs to my baby. I remember I did get to sing Jesus Loves Me and Jesus Loves the Little Children while I was pregnant with Jackson at AWANNAS one night. We played one of the most beautiful renditions of Jesus Loves Me at Jackson’s funeral. I know it’s a long way before we get Ryan home but I can’t wait to sing to him in his room!

Ryan looks soo good today! He has considerably less fluid on his body. They have been able to stop one of his diuretics and decrease his dopamine. He is still making very good urine and his blood pressure has been awesome! He has held his temp so well that they took his tent out of his bed. They only weigh him when the doctor orders for a weight to be performed and today he weighed 1 pound 7 ounces. He has successfully excreted 4oz worth of extra fluid!! He still has some fluid around his tummy and the back of his head. Hopefully the diuretics will be able to remove that fluid in the next few days.

Ryan is too cute when he tries to open his eyes. He will drop his chin just as far as he can get it and then raise his eyebrows just at high as he can in an attempt to open his little eyes. His eyes haven’t opened yet due to the sedation that he has had. Now that he is more stable they’ve been using less sedation and he is able to wiggle his eyes more. He is soo close to getting his eyes to open! Whenever he hears us in the room talking to him he gets those little eyes to moving and tries soo hard to get them to open.

Dean was able to change Ryan’s first diaper today!

He also was able to give him a kiss!

Happy First Holiday Ryan!!



Ryan had a much better night last night! He has continued to make urine and all his other vital signs have been stable. His blood count was within the normal range for him this morning so he doesn’t need blood at this time. The doctor did wright for a repeat echocardiogram in one week to keep a close eye on his heart. He has some leaking from his valves so they are going to watch them. The doctor said that they believe that it is due to all the excess fluid on his body.

Ryan’s fingers look so good this afternoon! The swelling has gone down significantly! He little fingers just keep looking longer and longer each time we see them!

We were able to meet the Doctor N today. We haven’t met him yet but he knows our son well. He stated that this little guy has one large will and fight to live! He also stated that he could tell that there were numerous prayers around him that have also aided in seeing him through this time. I needed to hear that today. There is a part of me that is starting to feel guilty asking Ryan to go through all of these things just so I can have a child. It meant more than the doctor could even know to hear that Ryan had a great will/fight to live. He is such a precious little boy. I hate thinking of all the things he has been through and everything he will be going through.

The nurses are doing a tremendous job keeping him calm and comfortable during these early stages of his life. I just pray that at some point in our lives God can use this experience for His good.

 

The words from all the staff have been so comforting. The nurse last night stated that when she left the night before last she prayed for Ryan’s kidneys to start making urine right before she went to sleep. We have been truly blessed with such compassionate and faithful doctors and nurses taking care of our son!

Did I mention I LOVE this little face!!!

Today has been an exceptionally tough day. Ryan has stopped making urine. The doctor is concerned because his potassium will get way to and cause some serious heart rhythm problems. He has been started on low dose dopamine to help make sure his kidneys are perfused properly. His IV diuretic has been increased and a second diuretic has been added. The doctor did a repeat echocardiogram this morning to make sure that his heart still looked ok after and it came back normal. We just need the little guy to make some urine!

I think I’ve been the biggest mess today that I’ve been this entire time. Just the thought of losing another child kills me. I didn’t realize that he hadn’t made urine in a 24 hour period.  I know there will be ups and downs on our journey but today has been the most serious that the doctors have looked this entire time. I’m trying my best to stay positive. I know the Lord won’t give us anything that we can’t handle. I just pray he allows Ryan to get through his hospitalization to where we will be allowed to raise him!

Around 3pm Ryan did have a wet diaper. It had 8ml of urine. Its small but it’s a decent start. His catheter is also starting to have a little bit of urine beginning to drain. His lungs are showing some signs of distress now. They have had to turn up his oxygen. We are just praying that he gets through this valley.

Ryan has turned a corner this afternoon. He has begun to make urine and it is picking up flow nicely. His color looks much better today. He has more of a pink hue to his skin. His breathing is also doing better. He has been moving his eyes underneath his eyelids. They are still fused at the moment but as we talk to him he is trying his hardest to get them to open so that he can see us.

It has been a very long and bumpy day but we are so very thankful for all the prayers for Ryan today! He is doing much better and we just pray that he keeps this up!

Cloud Nine Part Two

Daddy had his “cloud nine” moment this evening. He was able to give Ryan his first kiss on the forehead! Dean was so excited that he had to call Auntie Lesha and gloat. I gave him a goodnight kiss before we left and to be honest it was a little bitter sweet. The last little forehead I kissed his size was ice cold. I’m still so very thankful he is alive and doing well today!

During our visit his nurse allowed Dean to place Ryan’s Papa Smurf in the bed with him for a reference on his size. He longer than Papa Smurf and close to the same width around as his smurf!

Ryan tolerated laying on his tummy very well today. His urine output has dropped off a bit but it is still ok. He is maintaining his temperature well for longer periods of time. He has tolerated his tube feedings so far. They check residuals (the amount left in his tummy before they initiate his feedings) and they have been 0. He still has a very long way to go but it is encouraging that he has been able to tolerate turning and lying on his tummy.

Cloud Nine

I’m having a very proud Mommy moment! I will finish posting about our day later but I couldn’t resist a quick update! Our little man did awesome overnight! When I spoke with the nurse this morning she was soo excited. She said he was going to become a “big boy” today! The doctor took out his line that was in him umbilical artery and he has started his tummy feedings!! They also weighed him this morning and he now weighs 1lb 11oz! Most of this is due to fluid but he has grown some on his own.

His bed was open when we arrived this morning so that the nurses could change his linens and reposition him. Since his line is out of his umbilical he can now turn from side to side and lay on his tummy. This will also help him drain the excess fluid!

I went to touch his little hand and he grabbed ahold of my finger and would not let go! He was holding his oxygen and temperature perfectly so we were able to drop the sides of his bed down and sit with him for almost a good hour!

These ‘little’ feet amuse me! He has a long way to grow to grow into these feet! I just LOVE them!!!

Gammie got to give him his first kiss on the hand! She got a little teary eyed but we had the best little visit with him!!

Ryan had a very good night. He held his oxygen, blood pressure, and urine output well. He is still off of the Dopamine (medicine that help holds his BP up). His head ultrasound came back completely normal!!!

Little man looks so peaceful sleeping when we went to visit today. You could tell that he wasn’t just sleeping because of sedation but he was actually resting. The doctor discontinued his photo therapy (smurf light as Dean refers to it). He is now able to sleep in a nearly blackout warm and cozy bed. I didn't have the heart to wake his up this afternoon. His little body is looking soo much better than it has! The excess fluid is comming off slowly but surely.

Auntie Lesha got to touch Ryan for the first time. I think she was on cloud nine! Her time was cut short unfortunately. Our little man is very partial to his Momma. If he hears me talking he gets very persistent when me or Dean is in the room. He wants his feet/hands held by either Mommy or Daddy. I told her it was alright. Mommy gets booted out after several minutes if Daddy is in the room.

Since his temperature has been holding on its own we have been able to “tag team” our little man! Daddy on one side of the bed with one set of extremities and Mommy on the other side of the bed with the other set. It is sweet. You can feel him completely relax and rest as we are “holding” him.

Gammie got her first taste of the little breaking her heart today. He has gotten to where if we remove our hands from him or if he hears our voices and we are not touching him he will reach his hand for us. His nurse had to resitet one of his IV lines. Gammie stayed in and held his hand and when she took it out after she told him goodnight he reached back up for her. You can usually talk to him and calm him down but it still breaks our hearts when he does it. We know that he must rest and have decreased stimulation but it is still hard to walk away from him when he reaches. Thankfully most times we can calm him down by talking to him!!