5 weeks 31 weeks gestation

Ryelee now weighs 2 lbs 14.5 oz and is 15 3/4 in. She has a new cousin down the hall who was born a week ago at 33 weeks. At 4 lbs 5 oz and 16 in she looks huge next to Ryelee. Not that they have been side by side, but just to look at them.
Ryelee was doing well for most of the week. They started feeding her and she tolerated it well for a few days. Then her stomach started to bloat. Her digestion is slow and she is full of gas. There is not alot you can do with that since she can't take Gas-X or something and she can't walk around. They have quit feeds for now and are trying to relieve the gas by a tube into her stomach and enemas. The distension put pressure on her lungs and heart and caused her heart rate to drop significantly 5 X in 15 minutes. She had to be put back onto the ventilator. They have also put her back on antibiotics just in case while they wait for the cultures. She also required another blood transfusion. She has so little blood volume and they are always testing for one thing or another. Even though they take the least amount possible and use it wisely she still has needed several transfusions. Which doesn't mean a pint of blood like we would need, it means a few ml.'s, which is enough for her tiny body.
Daddy got some adorable pictures of her smiling. The one I am posting is when Mommy was helping to give her a bath. She has to have sponge baths, no real bath until she is ready to come home. They like to have parents involved in every aspect of care that they can and her Mommy and Daddy are really good about this. They really enjoy the time that they can spend holding her and taking care of her.
Mommy and Daddy were talking about Ryelee's roommates Dad and Grandpa visiting, (they live a couple of hours away and don't get up there much) and her roommates Grandpa got to hold her. I lit up when I heard that! I didn't know granparents could hold them. Then Mommy told me that they had decided skin to skin holding was only for her parents. So I still have to wait until she can be held just in a blanket. Darn this is so hard to not be able to hold her!
Mommy has been having pains in her calf and still having abdominal pain. She went to the Dr and he pretty much brushed her off. She will see the Dr that delivered her on Wed for a six week checkup.
In other news. I took the 3 girls at home and a friend who is staying with us to the water park all day yesterday. We also went with some of our friends who are moving Sat. We will be way sad to see them go. The 2 youngest had wanted their birthday parties early so their friends could come so we celebrated their birthdays yesterday by going to the water park. It was so much fun. I had never really gotten into the slides, but I decided hey I spent the money I might as well try it. I had a great time. They all did too and we came home hot and tired, but it was worth it! We are looking forward to a big family reunion next week. We have not had one in a long time for my husbands family and everyone will be there. Should be fun.

A day in the life of a NICU babies parents

6:30 a.m. Alarm goes off Dad gets in the shower and Mom pumps milk.
Mom makes breakfast and they eat together.
7:45 a.m. Dad leaves for work and Mom lays down for a while.
9:00 a.m Mom must get in the shower before she pumps again.
10:00a.m Done with shower and pumping Mom straightens up the apartment and gets
ready to go to the hospital.
Noon Time for Lunch before Mom pumps again, then she will have to run errands or work
on projects.
2-4 p.m. Lately mom has been able to hold baby for up to 2 hours in the afternoon. How nice to
be able to rock her tiny baby. Pump again.
4:30 Pick up Daddy at work, go home for a while for together time, dinner, and of course to
pump before going back to the hospital.
7:30 or 8 Go back to the hospital to help care for baby and Daddy holds her. They read bedtime
stories to her everynight.
10:30 or 11
Go home to bed. Mom pumps while Dad uploads pictures and adds to his blog which

4 Weeks Old 30 Weeks gestation

The Sweet Sound of Silence!!! And the sweet sound of a tiny babies cry. On Tuesday June 10 after having been out of town for my beloved aunt's grave side services. I walked into Ryelee's room and the curtain was closed around her bed. I asked a nurse if I could go in and she said "Amanda do you want a visitor?" Amanda was holding her baby skin to skin! Oh what a beautiful sight. It took me a minute to notice the absence of noise from the ventilator. She had been removed from it on Sunday, they had tried CPAP which put too much air in her belly so they took her off that and she simply had oxygen into her nose, but was breathing entirely on her own! Well she receives caffeine to stimulate her brain to remember to breath. She can also cry now. Such a sweet little sound. I was so so happy to see my daughter holding and rocking her baby. She can now hold her for up to 2 hours a day and daddy can hold her too. He only gets an hour or so a night because he is too wiggly. Yesterday she gave him a great b-day present. While he was holding her she pooped out a whole bunch of meconium! This is so wonderful because it means her bowels are functioning. She has never been able to go on her own and this is wonderful news. They hope to start feeding her milk soon. They will start with 2/3 oz. such a tiny amount but she is a tiny baby. She is now 15 inches and weighs 2 lbs 6 1/2 oz, so once she gets started on mama's milk, I mean cream, she should gain more. The Dr has warned us to be prepared for more problems with feedings though.

Ryelee may soon be joined in the NICU by her little cousin, whose mama is experiencing some trouble. She is 33 weeks gestation and we pray that if she has to be born for mama's sake that all will be well with her and her mama.

3 weeks old 29 weeks gestation

Another rough week.  Ryelee has had trouble with her ventilators.  We had a big family/friends fast for her and she is now requiring less oxygen.  She is being given some medicine to help her lungs heal.  Ryelee has had problems all along with not being able to pass stool.  She has been giving enemas repeatedly, which only help a little.  Monday they took her down to radiology and did a barium enema x-ray which showed no blockage in her large intestines and they didn't want to go into the small intestines.  Tuesday her little tummy was distended, and gray.  They thought she may have NEC or be leaking the meconium into her abdomen.  The surgeon did not want to operate then because she was still doing well (vitals and blood work) and her little tummy was still soft.  Early Wed they called her mom and dad to report her tummy was worse and she needed surgery.  Before we could even get there they were prepping her for surgery, which they performed in her room, to minimize the trauma of being moved so much.  The surgeon later told us that she had a little diverticulum (Thanks alot Grammie Pammie) on the R side by the appendix that had a very small hole.  She cut out the diverticulum  and sewed her intestines back together.  They usually have  to do a bag so we really hope this heals well.  Her blood was low last night and because of her incision bleeding (a tiny bit but she doesn't have much anyway and when the vampires come and collect she has even less) they have had to do 2 transfusions, give her vitamin K and some plasma and platelets.  

On Sunday when I was there, oh my word, Ryelee had changed.  I had not seen here in a week and a half due to my health problems.  We got some cute pictures of mom and dad on each side of her "condo" reaching through the doors and touching her.  Grampy got a picture that he swears she is smiling.  I think so too.  On Tuesday when she was so sick Grandma and I were in there and Daddy, Mommy and Grampy were out in the other area.  The nurses raised her lid of the "condo" (isolette) so I knew they were going to be doing something to her.  I walked over to watch of course, that is just how I am.  So I like to talk to her and tell her who is there, give her pep talks, and tell her we love her.  So I told her Grandma and Grammie are here Ryelee.  She opened one eye to look.  Then Mom walked in and I said "Mommy is here Ryelee can you open your eyes for her?" and she did!  It was the cutest thing I ever saw!  She has such a special spirit.  One day We were talking to her and she was trying so hard to open her eyes and she was moving her mouth and it looked like she was trying to say if I could just get this thing out of my throat I would talk to you.  She definitely can "talk" to us.  She is very special and I am so grateful for the opportunity to be her Grammie!