This was the day we had waited for for so long. It was Labor Day weekend Sunday Aug 31st. Ryelee had been home for only 8 days when we had her blessing. We were not able to take her to church due to the fact that she can not go out in public for her first year. So we had a family dinner and her blessing at Grammie and Grampy's house.
We had a nice dinner with turkey and stuffing, mashed potatoes, rolls, delicious salads, corn on the cob and yummy desserts. Most of the family were there with the exception of 3 aunts. Ryelee got to meet most of her cousins.
Then came the blessing. She was given a beautiful blessing by her daddy, with both Grampa's and daddy's brothers and Matt standing in. Ryelee looked so beautiful in her white dress that Grammie had made. It was a wonderful day.
Wednesday, October 8, 2008
RYELEE"S HOMECOMING
Ryelee came home on Sat August 23 after spending 101 days in the NICU. The NICU social worker had said once during a care conference that they would have a parade when Ryelee left. Well she came through but not quite as big a parade as she would have had on a week day. Due to her recovery from her surgery to place a Broviac catheter and do a rectal suction biopsy, she was delayed a day from coming home. These were necessary because Ryelee would be going home on TPN therapy and she needed the biopsy to check for ganglain cells, and this was the least invasive way to biopsy. Ganglian cells are the cells that cause the muscle contractions to move the food along through your intestines. They thought that Ryelee may have a condition in which the cells which start out at the brain and move down through the digestive track, may not have made it to the end. This could explain her distended abdomen and the trouble she has with digesting food and pooping. Thankfully(?) she does gave the cells, which means that diagnosis is highly unlikely. I question thankfully because her surgeon does. If they did not find cells she would know what to do, go in and remove the part of her colon which does not have cells and sew it back together again. Know we are playing a watch and see game.
Before they come home the parents spend a night or more with the baby in a room close by the NICU which is set up like a nice hotel, except for the paraphenilia for babies monitors and oxygen and things like that.
At the time of her release, there were not very many babies in the NICU, which meant not a lot of staff who knew her were around, the patient care coordinator and social worker work weekdays and were off that day too. Due to construction in her room which was started almost as soon as she was moved out we couldn't even go back in there. So her parade consisted of blowing some blowers and her mylar helium balloons and princess crown that she wore home.
Then after she was home, her grandparents came over, Grampy brought her 3 aunts who had not been able to meet Ryelee in the NICU, since they are under 18. Then came the home health nurse to teach mom, dad, Grandma and Grammie how to set up, run and disconnect her TPN. She would be totally wireless for a few hours a day!
We are so greatful to have her home. We are thankful for all those who cared for her and her parents over this long battle to get her big enough to come home. It has been an amazing process to watch essentially the last trimester of pregnancy from the outside.
Before they come home the parents spend a night or more with the baby in a room close by the NICU which is set up like a nice hotel, except for the paraphenilia for babies monitors and oxygen and things like that.
At the time of her release, there were not very many babies in the NICU, which meant not a lot of staff who knew her were around, the patient care coordinator and social worker work weekdays and were off that day too. Due to construction in her room which was started almost as soon as she was moved out we couldn't even go back in there. So her parade consisted of blowing some blowers and her mylar helium balloons and princess crown that she wore home.
Then after she was home, her grandparents came over, Grampy brought her 3 aunts who had not been able to meet Ryelee in the NICU, since they are under 18. Then came the home health nurse to teach mom, dad, Grandma and Grammie how to set up, run and disconnect her TPN. She would be totally wireless for a few hours a day!
We are so greatful to have her home. We are thankful for all those who cared for her and her parents over this long battle to get her big enough to come home. It has been an amazing process to watch essentially the last trimester of pregnancy from the outside.
Friday, August 1, 2008
11 weeks old 37 weeks gestation
Ryelee is now 11 weeks old, 37 weeks gestation. I haven't updated in a while so I will attempt to go back and give short overview.
July 1 I held Ryelee for the first time! I was the first grandparent to hold her and it was so wonderful! 2 days later Grampy and Grandma W got to hold her. Grandpa W got to hold her a few days later.
July 12 Baby Shower. We had a scrapbooking shower where we made scrapbook pages so all Mom has to do is put the pictures on. Aunt Kristal got to hold Ryelee. The first of the aunt's to do so.
Week 9 and 10
Mom's milk supply is dropping. I advised her to drink Mother Milk tea and to pump every 2 hrs. She had been on continous feeds, which means that a little bit of milk was constantly being dripped into her tummy. Mom was able to "recreational" breastfeed after pumping only. Her stomach started distending again on Thurs night. On Sat they talked to the Dr.'s and since Ryelee's PICC line had gone bad overnight they wanted her to stay at the hospital and nurse her every 3 hours. They stayed and Mom nursed every 3 hours and Ryelee handled it really well, although her tummy did not go down much, she did digest the milk with very little residual. They were able to stay for a week. We thought they were getting close to sending her home. I love the fact that I can hold her when I go to see her now.
Week 10 and 11
We were at the county fair all week. Si and Mary showed chickens and entered their ceramics. They each got 2 red ribbons, 1 blue ribbon and Si got 2nd place in Showmanship with her chicken. The judge was really critical of the poultry in the show for being "commercial". I think he needs to realize that these are mostly kids from farms bringing what they have and not some expensive "show quality" birds. On Sat mom and dad had to leave the room they had been staying in because they needed it for a baby who was going home. On Sunday night while at the fair still I got a call that Ryelee was crashing and needed a blessing. My husband picked me up and we drove in to the hospital to help give her one. Her temperature had been low and after the blessing and her other grandma holding her she was up to normal. The nurse commented that it had worked.
On Monday I went in and held her for 2 hours and fed her a bottle, because Mom wasn't available. It was a stressful experience to feed her and watch her gulping, quit breathing, panting. I had to hold her straight up on my lap and keep taking the bottle away from her and wait until she could breath again. All for a little over an ounce of milk!
Tuesday she was down even more. They tried to put a PICC line back in to give her the nutrients and fluid she needs as she had lost a little over 3 oz over the last few days, since Mom
had not been there to nurse around the clock. They couldn't get the PICC in so they started a regular IV. She gained weight overnight. On Wed we had a conference to talk about her care. It was decided that she would remain on the TPN as long as she needed to be on it to continue to grow. She could go home on it too. She just needs to get her respitory system back on track, and not need to go up on her oxygen when she eats. Which is better when she is nursing. She also need her eyes checked again for ROP, to see if she could be on home oxygen. When her eyes were checked she did have ROP and needed surgery on Thurs afternoon. The Dr went in and lasered her eyes in front of where the vessels started to overgrow so hopefully that stimulates the vessels to grow into the non lasered portion and grow normally again. This will take 2 weeks before we know if it worked. If left untreated this will cause blindness due to retinal detachment. This disease is fairly new and very common in micro-preemie babies like her, born less than 30 weeks and less than 3 lbs. It is new because babies born that early usually didn't used to live long enough to develop eye problems.
It is so hard on Mom and Dad especially but also us grandparents who were hoping that she could go home soon.
July 1 I held Ryelee for the first time! I was the first grandparent to hold her and it was so wonderful! 2 days later Grampy and Grandma W got to hold her. Grandpa W got to hold her a few days later.
July 12 Baby Shower. We had a scrapbooking shower where we made scrapbook pages so all Mom has to do is put the pictures on. Aunt Kristal got to hold Ryelee. The first of the aunt's to do so.
Week 9 and 10
Mom's milk supply is dropping. I advised her to drink Mother Milk tea and to pump every 2 hrs. She had been on continous feeds, which means that a little bit of milk was constantly being dripped into her tummy. Mom was able to "recreational" breastfeed after pumping only. Her stomach started distending again on Thurs night. On Sat they talked to the Dr.'s and since Ryelee's PICC line had gone bad overnight they wanted her to stay at the hospital and nurse her every 3 hours. They stayed and Mom nursed every 3 hours and Ryelee handled it really well, although her tummy did not go down much, she did digest the milk with very little residual. They were able to stay for a week. We thought they were getting close to sending her home. I love the fact that I can hold her when I go to see her now.
Week 10 and 11
We were at the county fair all week. Si and Mary showed chickens and entered their ceramics. They each got 2 red ribbons, 1 blue ribbon and Si got 2nd place in Showmanship with her chicken. The judge was really critical of the poultry in the show for being "commercial". I think he needs to realize that these are mostly kids from farms bringing what they have and not some expensive "show quality" birds. On Sat mom and dad had to leave the room they had been staying in because they needed it for a baby who was going home. On Sunday night while at the fair still I got a call that Ryelee was crashing and needed a blessing. My husband picked me up and we drove in to the hospital to help give her one. Her temperature had been low and after the blessing and her other grandma holding her she was up to normal. The nurse commented that it had worked.
On Monday I went in and held her for 2 hours and fed her a bottle, because Mom wasn't available. It was a stressful experience to feed her and watch her gulping, quit breathing, panting. I had to hold her straight up on my lap and keep taking the bottle away from her and wait until she could breath again. All for a little over an ounce of milk!
Tuesday she was down even more. They tried to put a PICC line back in to give her the nutrients and fluid she needs as she had lost a little over 3 oz over the last few days, since Mom
had not been there to nurse around the clock. They couldn't get the PICC in so they started a regular IV. She gained weight overnight. On Wed we had a conference to talk about her care. It was decided that she would remain on the TPN as long as she needed to be on it to continue to grow. She could go home on it too. She just needs to get her respitory system back on track, and not need to go up on her oxygen when she eats. Which is better when she is nursing. She also need her eyes checked again for ROP, to see if she could be on home oxygen. When her eyes were checked she did have ROP and needed surgery on Thurs afternoon. The Dr went in and lasered her eyes in front of where the vessels started to overgrow so hopefully that stimulates the vessels to grow into the non lasered portion and grow normally again. This will take 2 weeks before we know if it worked. If left untreated this will cause blindness due to retinal detachment. This disease is fairly new and very common in micro-preemie babies like her, born less than 30 weeks and less than 3 lbs. It is new because babies born that early usually didn't used to live long enough to develop eye problems.
It is so hard on Mom and Dad especially but also us grandparents who were hoping that she could go home soon.
Thursday, July 3, 2008
7 weeks old 33 weeks gestation
Ryelee now weighs 4 lbs 1.5 oz and is 16.5 inches. She is growing even without being able to eat. They have her on fats and lipids going straight into her veins.
The good news is we can now hold her swaddled in a blanket. I was the first one (besides mom and dad of course) to hold her! I was there with Mom and she asked me if I wanted to. I was so excited. It was wonderful! I had waited so long!
She has been back and forth on CPAP, just on canula, back on CPAP. She is currently back on just oxygen and is doing pretty well with it. She had a set of GI track x-rays with contrast and it took several days to go all the way through her. Her motility (the movement of the intestines) is extremely slow. A pediatric gastroenterologist was called in. They have checked the sample of intestine from her surgery for nerve cells which they did find. However she could still have some disease going on. They may have to do further testing. For now they are starting feeds of pedialyte. It has been so long since she has been able to have anything go through her that they have to start really slow. Just like people who are in starvation mode you can't start feeding them rich food all of a sudden. Same thing for her. The motility in the GI tract slows way down.
We are very hopeful that she will handle this well and all will be OK. The Dr did say that she probably will not go home anywhere near her due date. That is so frustrating for her parents. They just want to take her home, love her and take care of her.
I got to assist Mom with giving her a bath. It was so fun to watch her. She was wide awake and so happy. She has little black and white pictures of animals on the top and sides of her isolette. She likes to look at them. She is such a sweet baby and it is amazing to me how early their little spirits start to show through. One day I was with her for about 3 hrs. Most of that time I was alone. She was awake and sometimes fighting CPAP. I read stories to her and attempted to sing I am a child of God, but I started crying and couldn't finish. She likes to be read to and talked to. She can definitely hear and understand. It was a very special time and I was on cloud nine for days.
The good news is we can now hold her swaddled in a blanket. I was the first one (besides mom and dad of course) to hold her! I was there with Mom and she asked me if I wanted to. I was so excited. It was wonderful! I had waited so long!
She has been back and forth on CPAP, just on canula, back on CPAP. She is currently back on just oxygen and is doing pretty well with it. She had a set of GI track x-rays with contrast and it took several days to go all the way through her. Her motility (the movement of the intestines) is extremely slow. A pediatric gastroenterologist was called in. They have checked the sample of intestine from her surgery for nerve cells which they did find. However she could still have some disease going on. They may have to do further testing. For now they are starting feeds of pedialyte. It has been so long since she has been able to have anything go through her that they have to start really slow. Just like people who are in starvation mode you can't start feeding them rich food all of a sudden. Same thing for her. The motility in the GI tract slows way down.
We are very hopeful that she will handle this well and all will be OK. The Dr did say that she probably will not go home anywhere near her due date. That is so frustrating for her parents. They just want to take her home, love her and take care of her.
I got to assist Mom with giving her a bath. It was so fun to watch her. She was wide awake and so happy. She has little black and white pictures of animals on the top and sides of her isolette. She likes to look at them. She is such a sweet baby and it is amazing to me how early their little spirits start to show through. One day I was with her for about 3 hrs. Most of that time I was alone. She was awake and sometimes fighting CPAP. I read stories to her and attempted to sing I am a child of God, but I started crying and couldn't finish. She likes to be read to and talked to. She can definitely hear and understand. It was a very special time and I was on cloud nine for days.
Friday, June 20, 2008
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.
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.
Friday, June 13, 2008
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
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.
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.
Thursday, June 5, 2008
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!
Thursday, May 29, 2008
2 weeks old 28 weeks gestation 2lbs 5 oz
What a rough week it has been!
Mom had trouble with leaking fluid from her incision. It was a mixture of blood and fluid that the Dr said was better to come out than stay in. It was kinda scary at first and meant Mom had to go to the Dr a few extra times to get that checked. Dad started back to work but only made it there a couple of times. Good thing he has family leave...
Ryelee has had a hard time. She developed an infection somewhere that despite many many test we may never know exactly what was going on. She had blood in urine and rectal blood. Because she was so sick it meant being reintubated and put back on the ventilator. This was problematic also to get the right ventilator and oxygen flow, for a while she was requiring extra oxygen which they don't like to give them for very long. She seems to be doing a little better again. We are so grateful for skilled caregivers who recognize a problem quickly and know how to treat her.
Mom got to hold her twice! Once all wrapped in blankets and once "kangaroo care" which means skin to skin. She really seemed to like it and Amanda was definitely glad to get to hold her. Dad also changed his first diaper ever.
Mom's 3 sisters who are over 18 came up this weekend and went to visit her on Sat. They were amazed at how tiny she is. After visiting Ryelee they all went to the house and we were supposed to have our usual family get together like when everyone comes home but where are Grammie and Grampa? They were at the ER for Grammies abd pain. She ended up being there for 5 days, missing all the fun with family. :(
They all did come to see her, which was nice, when she wasn't falling asleep in the middle of a sentence. Not exactly what we had planned but hey take what you can get huh. Also while the whole family was at the hospital on Sunday a pitbull killed Mary's goat. So we are all hoping for a better week next week.
Mom had trouble with leaking fluid from her incision. It was a mixture of blood and fluid that the Dr said was better to come out than stay in. It was kinda scary at first and meant Mom had to go to the Dr a few extra times to get that checked. Dad started back to work but only made it there a couple of times. Good thing he has family leave...
Ryelee has had a hard time. She developed an infection somewhere that despite many many test we may never know exactly what was going on. She had blood in urine and rectal blood. Because she was so sick it meant being reintubated and put back on the ventilator. This was problematic also to get the right ventilator and oxygen flow, for a while she was requiring extra oxygen which they don't like to give them for very long. She seems to be doing a little better again. We are so grateful for skilled caregivers who recognize a problem quickly and know how to treat her.
Mom got to hold her twice! Once all wrapped in blankets and once "kangaroo care" which means skin to skin. She really seemed to like it and Amanda was definitely glad to get to hold her. Dad also changed his first diaper ever.
Mom's 3 sisters who are over 18 came up this weekend and went to visit her on Sat. They were amazed at how tiny she is. After visiting Ryelee they all went to the house and we were supposed to have our usual family get together like when everyone comes home but where are Grammie and Grampa? They were at the ER for Grammies abd pain. She ended up being there for 5 days, missing all the fun with family. :(
They all did come to see her, which was nice, when she wasn't falling asleep in the middle of a sentence. Not exactly what we had planned but hey take what you can get huh. Also while the whole family was at the hospital on Sunday a pitbull killed Mary's goat. So we are all hoping for a better week next week.
Wednesday, May 21, 2008
One week old (27 weeks gestation)
May 21, 2008
Mom was released from the hospital 2 days ago. It was very hard to go home with out her baby. She is finding that with pumping, trips to the DR (mom is leaking blood and fluid from her incision) and the hospital to see Ryelee that she is alot busier than she thought she would be. Dad went back to work today and I spent the day helping Mom, running errands and going to the NICU. On Monday I was visiting Ryelee when they were giving her an enema, so they took her out of her "greenhouse" which provides humidified air to keep her skin soft and help her adjust to the dryness out here. I was watching them take care of her and the nurse said I could touch her head. I very softly cupped her little head in the palm of my hand. It seemed to be calming to her. I always talk to her when I am there. Just to tell her who I am and that I love her. Today when I was visiting they had her on her tummy with her legs tucked up and her little bottom in the air. It was so cute. Her skin is such a nice color where the bilirubin lights haven't been on her. She is red on the front.
Ryelee Update: She really wants to breath on her own so they are trying different ventilators to see which one will work best for her. She will probably be off the ventilator and onto CPAP in the next few days. They also give her caffeine to stimulate her brain center to breath.
They have started giving her colostrom. 1 ml every 3 hours. 5 mls is a teaspoon. They have to go slow to make sure she tolerates it.
Her blood pressure is still up and down and very minor adjustments are made to get it to be more stable.
She will be moved into an isolette in a few days, which will be quieter. She reacts to the other babies crying. They have observed her trying to suck on her tubes which is really unusual for this early.
Some really exciting news is that she opened her eyes! They were originally sealed shut like a kittens eyes. She has beautiful blue eyes.
Mom was released from the hospital 2 days ago. It was very hard to go home with out her baby. She is finding that with pumping, trips to the DR (mom is leaking blood and fluid from her incision) and the hospital to see Ryelee that she is alot busier than she thought she would be. Dad went back to work today and I spent the day helping Mom, running errands and going to the NICU. On Monday I was visiting Ryelee when they were giving her an enema, so they took her out of her "greenhouse" which provides humidified air to keep her skin soft and help her adjust to the dryness out here. I was watching them take care of her and the nurse said I could touch her head. I very softly cupped her little head in the palm of my hand. It seemed to be calming to her. I always talk to her when I am there. Just to tell her who I am and that I love her. Today when I was visiting they had her on her tummy with her legs tucked up and her little bottom in the air. It was so cute. Her skin is such a nice color where the bilirubin lights haven't been on her. She is red on the front.
Ryelee Update: She really wants to breath on her own so they are trying different ventilators to see which one will work best for her. She will probably be off the ventilator and onto CPAP in the next few days. They also give her caffeine to stimulate her brain center to breath.
They have started giving her colostrom. 1 ml every 3 hours. 5 mls is a teaspoon. They have to go slow to make sure she tolerates it.
Her blood pressure is still up and down and very minor adjustments are made to get it to be more stable.
She will be moved into an isolette in a few days, which will be quieter. She reacts to the other babies crying. They have observed her trying to suck on her tubes which is really unusual for this early.
Some really exciting news is that she opened her eyes! They were originally sealed shut like a kittens eyes. She has beautiful blue eyes.
Monday, May 19, 2008
Becoming Grammie Pammie
Amanda's due date Aug 19
Ryelee Mae's birth date May 14
My beautiful tiny granddaughter was impatient to be born. She started telling mom and dad she was ready on May 13. After calling the Dr they went to labor and delivery. They thought mom had an urinary tract infection causing pre-term labor. They started antibiotics and gave her something to stop labor, then sent them home. 4 or 5 hours later she woke up in labor again. Back to the hospital where they transfered her to the hospital with the best NICU in the region. The goal was to keep her pregnant as long as possible, hopefully at least 48 hours to allow the medicine to work and babies lungs to develop. We got to 12 hours when we noticed that despite what the monitors said she was in labor and had dilated completely. Because the baby was breach, they had to do an emergency c-section. There were 15 people in the delivery room, including mom and dad. They rushed Ryelee off to the NICU in a matter of minutes. Dad and I got to see her in the NICU about 1 1/2 hrs later. They brought mom by from recovery on the way to her room.
Ryelee Mae weighed 2lbs 4oz and was 14 inches long. She was a good size for a 26 week gestation baby. She will of course have many obstacles to overcome, due to immature lungs and digestive system, inability to keep herself warm and learning to suck which does not happen until 34 weeks. She also has an enlarged kidney which we knew from prenatal ultrasounds. We have faith that she will be OK, and ask for your prayers on their behalf during this time.
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