Updates

Jack is doing ok but he continues to have periods of apnea, bradycardia and oxygen desaturations. They generally get him going again with minimal stimulation. Occassionally he needs his oxygen increased or a quick ventilation. He is over 3 pounds now.

I am having a lot of trouble trying to get him closer to home. The hospital in Arkansas agreed to release him. The hospital here agreed to take him. The air ambulance and neonatal transport team is set up. The problem is that I don't have his social security card yet. He is on my insurance as a newborn but not yet in his name. In order to get him on in his name I need his birth certificate (I finally  got that) and his social security card. I have not yet received his social security card. I applied for it through the hospital.

I called social security to see what is happening. I was on hold for over an hour. When I finally got a person he told me he couldn't do anything for me. I told him I just wanted to know if it was mailed or if they actually received the application. He couldn't say. If I go to social security I need his birth certificate and proof of identity. They consider a medical record proof of identity for a newborn. The problem with that is that the hospital has him under Tierney's last name and they will not change a name once it is listed in a name. The birth certificate has him as my last name.

So Jack is stuck in Arkansas do to a social security issue. I am hoping to get it fixed ASAP. Ugghhhhh.

Pictures

Jack with his eyes open.

 

 

 

 

Jack getting blood.  

 

Jack and Mommy holding hands. 

 

 

Kangarooing with Jack. 

 

 

 

Saying goodbye (for now) to Jack.

 

 

                                                 Jack awake. Taken by Tierney on her visit.

Setbacks

Jack is having some major setbacks.  He was doing great. He was breathing on a relatively low oxygen setting and gaining weight.

I got here in Thursday in the very late afternoon.  Jack was doing well and I got to kangaroo with him.  It was great!  His weight hit over 3 pounds and we thought that was great.  The next day I got to kangaroo him again but his heart rate, O2 saturation and respiratory rate all dropped a number of times while I was visiting him.

I got here this morning and he is in an open crib, has an iv in each arm and his O2 level was way up.  I asked what happened and they told me he had a lot of issues during the night. He  had continual oxygen saturation and heart rate drops. He was struggling to breathe. They had to raise his oxygen levels.  When that didn't work they put him on CPAP.  Then they checked his hematocrit and it was low, so hey decided he needed a blood transfusion. He is getting two transfusions of packed red blood cells. They can't give actual blood because it would be too much volume. They have to suspend his feeds durning the blood transfusions and for four hours after he receives the blood.  That is a big deal because he is on continuous feeds.  His feeds will be stopped for 12 hours. He is on iv fluids because his feeds are suspended. The iv fluids are causing him to swell.

There were some signs that there were some problems yesterday. I held him for about an hour and when we put him back in his isolate we took his temperature. It was pretty low.  Th nurse attributed that to us forgetting to put his hat on but I doubt that could have caused his temperature to go so low so fast. However, his anemia can do that. They said the anemia is from blood draws as well as anemia of prematurity. His bone marrow is just not ready to make all the red blood cells he needs. He also looked a bit swollen to me yesterday.  I have learned that big weight gains are not always a good thing for Jack. They are also not accurate. He retains fluid and the big weight gains are usually related to that.

Jack had his eye exam  the day before I got here.  He does have retinopathy of prematurity (ROP) .  It is stage 1, zone 2. They are going to watch it. It can get better or worse. The are times when it can self correct or he will need laser surgery. The laser surgery usually helps, but not always. I had a feeling he would have this since he has just about every risk factor.  He still has risk factors for it to get worse, but I am praying that it doesn't.

I also found out that he has a long way to go on feeds. I was thrilled that he was taking his feeds so well but it turns out they were unable to feed him into his stomach so they bypassed his stomach and the feeds are going into his intestines. He is absorbing it and gaining weight, but he needs to be able to take feeds into his stomach before they can even think about releasing him. They can do much larger feeds into the stomach because it has a greater ability to expand. The intestine really doesn't expand much, that is why he gets continuous feeds, because it is a smaller amount over a greater period of time.

I was looking into getting Jack moved to a hospital that is closer to home. He would go in a fixed wing air ambulance with a neonatal transport team, but he has to be stable. He was very stable and things were looking pretty good, but unfortunately that is all on hold now. It was never a definite anyway, but I was optimistic that it might happen.

So, I am enjoying m visit with Jack. He is so super cute. I really loved holding him. I won't be able to hold him again today because he can't be moved during, or just after his blood transfusion.

I will be heading home tomorrow. I have to drive to Memphis from Little  Rock, then I fly to Atlanta and from Atlanta I fly to NY. It is not an easy trip, which is a bummer since it appears I will be doing this trip more times before he can move closer to home.

Thanks everyone for the prayers an good thoughts. Thanks so much to everyone who helped me with Julianna. XXXXXXXOOOOOOOO!

Heart Rate Drops

Jack is 5 weeks old today. I have not held him yet and that makes me pretty sad. I see pictures all the time of people "kangarooing" their preemies and often those babies are smaller than Jack. I really want to hold him this time and let him know that his Mommy loves him.

Jack is still off the ventilator but he continues to have periods of apnea (not breathing) and heart rate drops. When he has these "spells" as they like to call them in the NICU, he responds to stimulation and starts to breathe and that cause his heart rate to rise again. It is a little scary to me. He seems to have a number of them each shift.

He had another head ultrasound on 12/31 to check if he has any bleeding into his brain. It came back as "within normal limits" which means he has no bleeding into his brain. Obviously I am really happy about that.

He is going to have an eye exam this week to see if he has retinopothy of prematurity (ROP). In the worst cases ROP can cause blindness. They now do laser surgery for this and it has varying degrees of success. I will have the laser surgery done as soon as possible if he does have this. They can do it right in the NICU. Jack is at extremely high risk for this since he was so early, so small, on a ventilator for so long, anemic, on oxygen (still) and having periods of apnea. Here is a link if you want to know more about ROP.
http://www.retinopathy-of-prematurity.com/rop/

I am going to see Jack tomorrow. I have to fly into Memphis and drive over to Little Rock. It is about 100 miles and is a straight interstate ride. It is not too bad and I did it once before when I went down for a sonogram.

I want to find out more about the possibility about getting him transferred closer to home. I know they told me it was virtually impossible when he was first born I really want to find out if there is ANY way to do it. It is extremely difficult for me to go back and forth to see him. If I could get him closer to home I could go every day and feel like I am a lot more involved in his care.

Wearing Clothes!!

Jack is doing better. He is up to 2 pounds, 12 ounces. He is still on nasal O2, no vent. Tierney went to see him today and he was wearing clothes! So cute.

He had another head ultrasound today but they didn't have the results yet. He is eating 24 cc a feed. He is getting breast milk ( thanks Tierney!) and it is being supplemented with a calorie booster.

I am going there Thursday. I can't wait to see him and I am hoping that I can hold him. He is over a month old now and he has never been held and cuddled.

Happy new year to everyone!!!

Doing Better

Jack extubated himself yesterday. He grabbed the tube and pulled it out. They had orders to leave it out if he did that. He is on the nasal o2. Yesterday he was doing pretty poorly with that and they said it was likely he would be back on the vent soon.

When I called today they said he started to do better and he is still only on the nasal O2. He is still having some oxygen saturation drops and heart rate drops but considerably less than yesterday. They are going to leave him on just the nasal O2 for now but there is a possibility that may change.

He continues to do well with his feeds and has gained another ounce. He is now 2 pounds, 10 ounces.

Julianna and I had a nice Christmas but she is sick. She had a high fever on Christmas Eve and then again last night. We went to PM Pediatrics last night. They cultured her throat and checked her ears, etc. They did not find anything and said it was likely that it is some type of virus.

We went to my sister Alice Anne's house and my Dad and Betty were also there. We had a nice time with everyone. Santa brought Julianna a ton of gifts. Her favorite is the Barbie Dream House.  I am thrilled that he finally brought that. I always wanted it when I was a kid. LOL.

I hope everyone had a great Christmas!!!

Back On The Ventilator.

Jack is back on the ventilator. He had two prolonged periods of apnea that lead to his heart rate slowing down quite a bit. After the second time they re-intubated him and put him back on the ventilator. He is doing a lot better on the vent and they said his color got a lot better.

They said I should not get too upset about it because it is pretty common for preemies as early as Jack. They also said they are going to try to get him off the vent again soon. They had moved him into the step down unit when they took him off the vent. They are going to keep him there even though he is back on it.

They did tell me this would be a series of ups and downs. Uggghh.