He Is Eating!!!

"Out of difficulties grow miracles"  ~  Jean De La Breyere

I called tonight and the nurse told me that Jack tolerated three feedings!!! I am over the moon about this!! They were each 1.5 cc and given to him over a 2 hour period, but he tolerated it.  I really feel that this could make all the difference for Jack. I think if he can just eat and put some weight on he will get stronger and do well.

He got another blood transfusion today. His ventilator settings stayed the same. He will have an x-ray of his chest and abdomen tomorrow. (They only need one film for his tiny body.)

I watched my Dad tonight and it was a tough evening. He was really difficult and Julianna stayed awake until about 11 pm. It should be interesting getting her up tomorrow. They have some sedatives but they don't do anything. I get through it by mentally amusing myself. Thinking things like, should I crush his pill and have him snort it? Or, can we simply ask the doctor for whatever the Wild Kingdom guy (Jim) used in the dart gun that could stop a charging rhino in seconds?

Any disruption in his regular routine makes him really difficult. I want to help so Betty can get a bit of a break but I must admit that it is becoming super hard. First I had to take him with us to Julianna's violin lesson. He was super good there. I picked up food and we went back to his house. It went down hill from there .He was trying to hide my sneakers, wearing my jacket, peed on the bathroom floor (not missed, directly),  tried to carry Julianna and she was yelling that he was squeezing her, put three pairs of pants on (at the same time) when I was trying to get him to put pajamas on, tried to open presents Betty wrapped to send out, threw out mail and on and on. Most Alzheimer's patients get worse at night and he is no exception.

It was stressful with my Dad but when I got home I called about Jack and now I am super happy. I sure hope he decides eating is good and he keeps it up. Way to go Jack!

Raised the Vent Settings

I called about Jack. They said his blood gas was not good and they had to raise the ventilator settings. The nurse said he is doing better with the higher settings. They were getting ready to do another blood gas to see how that was.

They weighed him yesterday and he lost another ounce. They are going to try a feed some time today.

Tierney visited him yesterday and was able to bring him more milk. I sure hope he gets to eat some of that milk soon. If he would only get the feeding down I think it would make a world of difference.

I sure hope to get some positive news soon. They did say he was resting comfortably. Time to rally baby Jack!!

Back Under the Lights, More Blood

I called about Jack about 3am Arkansas time because I was awake and of course I worry. The nurse said his bilirubin was getting a little high and he looks a little jaundiced so he will be going under the photo therapy lights again. His blood counts are also a little low so he will be getting another blood transfusion. She said he was not showing any symptoms of that and all his vitals are stable.

She also gave him a bath and changed his linens. She was not able to weigh him because he will not tolerate being off the ventilator for very long.

She said he was resting comfortably and is having a good night.

He likes the oscillator, but not food

Jack is doing well on the oscillator. His O2 saturation and vitals have been great since he has been on it. They are not sure how long he will be on it but I hope he is on it long enough for his lungs to heal. They can't give me any real idea because each baby is different.

His last feed was a failure. A few hours after the feed they aspirated bile tinged residual. She didn't tell me how much but it was enough that they are stopping his feeds again. I asked her if this was normal and she said it was not normal but it was expected. In other words, this is common for babies as early as Jack. She said some take awhile to start feeding. She said his belly was soft and that is good. He will try again in a day or so. I don't know if he is losing weight because of all of this because they only weigh him on Mondays and Thursdays. They will let me know tomorrow what his current weight is.

It is not known why, but white male babies are known to do poorly in the NICU. I remember them telling me that when Julianna was in there. My cousin Kaitlyn told me they said that about her son too. "Wimpy white boy" syndrome. I told Tierney that and she said she is hoping Jack has some black in him to help him fight. I sure hope so too!

Up and Down

One step up, two steps back.


Jack is gaining in some areas and losing in others. He had an x-ray that showed that his lungs are swelling. That is a bad sign and because of that they took him off the regular ventilator and put him on an oscillator or high frequency ventilator. The oscillator gives him and extremely high amount of breaths per minute (over 600)  but it doesn't have the force that the regular ventilator has. They are worried that his lungs are starting to get damaged from the regular ventilator.

When I was speaking to the nurse I said he was breathing on his own at first, then was on the ventilator. A few days ago they told me he had the lowest settings possible for the ventilator, which was a great sign. Now he was doing so poorly on it that he had to be put on the oscillator. I told her it seems like he was going backwards. She said he is. She said this back and forth is very common in babies born at his gestational age. Many of them do this for a very long time.

On a brighter note, they gave Jack 1cc of Alimentum at 10 am today. They aspirated later and they did not get any back. So he tolerated 1 cc and that is awesome!!! They will keep trying it and hopefully he keeps making progress there.

Julianna, Grandma, Pop-Pop and I all went to breakfast with Santa today. She had a great time. I had planned a lot of things for us to do around Christmas this year because I knew it would be hard to do with the baby next year. I am going to try to still do as many of the things we can when I am in NY. Next week I will be in Arkansas to see Jack. I will be thrilled to see him.

Resting



Tierney went to visit Jack tonight and she sent me this picture. Jack is on his belly. The large hand on him is called a Zaky. It is weighted with beans like a bean bag. It is designed to provide comfort to preemie babies and it simulates a hand holding them.He had a hard day so I am glad he is cozy now.

 

Feed Are Not Going Well

They tried to feed Jack three times over the last 24 hours and each time it did not go well. They gave him 1.5cc of breast milk. A few hours later they aspirated about half of it back out. They tried again on an empty belly and they got about 2/3 back. Then they tried again and got 1.2cc back. They gave him pedialyte and stopped feeding him.

They are measuring his belly to make sure it is not swelling. They are going to xray it in the morning. They have him getting nothing through the stomach for at least 24 hours. They have increased his intravenous rate to try to make up for some of the difference.

The nurse was very encouraging. She said this does not mean he has NEC but they have to make sure. She said his GI system is not ready for feeds but it could just be that he isn't developed enough yet. She said this is very common in babies this age.

I was really hoping it would go well and of course this is a big blow. It is so hard to be here when he is so sick and needy way down there in Arkansas. I am going on 12/14. I wish I could be there now. I do know he is in good hands but the worrying is agonizing.

I was off from work today but I watched my Dad so Betty could get out. It is hard to watch him too because his deterioration is so profound.

On a lighter note, Julianna is a little love. She is super excited about Christmas and Santa and her happiness fills my heart with joy.

Thanks everyone for all the prayers. Please keep them coming.