Wednesday, December 30, 2009

Still going strong

Just wanted to report that Rachel is still on the nasal cannula and doing well. She has made it through the first 36 hours. We hope she will continue to do well. I enjoyed holding her tonight and enjoyed snuggling with her. Haley is also doing well. The occupational therapist fed her again today and she took 9 cc's. She seems to be getting the hang of drinking out of the bottle and I'm sure the amount she takes will increase with more time and experience. Haley is so adorable. She makes cute faces and baby noises. It sounds like she is trying to "talk". Our girls are so precious and we again express our gratitude for them in our lives.

Tuesday, December 29, 2009

There is Light at The End of The Tunnel!

Rachel got rid of the CPAP today and was put on the nasal cannula. We were so happy to see her beautiful face without the CPAP tubes. Rachel was so much happier and comfortable. This is the 3rd try on nasal cannula and we hope that the third times a charm. We are worried that her airway may not be strong enough yet and she will have to go back on that dreaded CPAP or worse have to have a trach. We are going to be optimistic though and believe in Rachel. We know she can do it. Rachel is 2 pounds heavier than the previous time they tried her on the nasal cannula. She has been growing better the past month. The next 24 hours will tell if she will be able to make it on the nasal cannula or not. Please pray for her!

Rachel on the nasal cannula again



Haley is doing well. The occupational therapist worked with her again this morning on taking the bottle, but Haley was sleepy and only took 2.5cc. They will continue to work with her and hopefully they will find the time when she is awake. They will also start working with her 2 times a day. The neonatologist Dr. Abrams mentioned to us today something we have been waiting to hear since they were born. He said that he thinks Haley may be able to go home in a couple of weeks. This is the first time the doctors has ever given us a time frame of when Haley may get to go home. We are so excited and a bit nervous as well. As the next 2 weeks go by, we will get a better idea if she will be coming home that soon or not. She still needs to work on taking formula from a bottle. We hope she will catch on quick and master it well.

Haley looking so angelic

Monday, December 28, 2009

Feeding and growing

As the new year approaches the little ones continue to grow and thrive. We are so grateful for the little steps our girls are making each day. We know that the Lord has and continues to help Rachel and Haley along their journey into this world.

This past weekend Rachel had her first bath in her own little bath tub we bought for her. Rachel seems to enjoy her bath time and loves her "spa" time. After her bath, Rachel always falls asleep well. Rachel is still growing, her weight is 7lbs 4oz. Rachel has a little bouncy chair she sits in and loves it. We came in tonight to visit Rachel and she was sound asleep in her bouncer. Rachel is going to have the ENT doctors come look at her again this week and evaluate her airway. We are hoping the ENT doctors will want to try her on a high flow nasal cannula again. Rachel is such a little fighter. She will out grow all the challenges she is facing now. We thank the Lord everyday for her precious life.

Thomas and I giving Rachel a bath



Haley is plugging away like the little champ she has always been since day one. Haley continues her progression after her bowel surgery. She was able to be weaned off her nasal cannula completely two days ago. Haley was also able to feed once again from a bottle today. It was the first time they (occupational therapist) fed her from a bottle since before her bowel surgery. She took 10cc's from the bottle. We look forward to when she can get up to full feeds and get off the TPN. Haley is growing at her own pace. She is up to 6lbs 15oz. Haley has been through so much, but yet she never quits. We are so proud of her and all that she has been able to get through with the help of the Lord. We are also eternally grateful for our little Haley, she is such a beautiful little girl with such a powerful spirit about her.

Aunt MaryAnn holding Haley

Friday, December 25, 2009

The girls first Christmas

Merry Christmas to all! We hope that everyone had a great Christmas. We had a great Christmas because we spent part of it with our precious little girls. Today was an uneventful day for the girls, which is a good thing.

Rachel was asleep the whole time we were with her. She didn't sleep well last night so today she was playing catch up. Rachel is getting so big compared to where she was. She continues to grow and hopefully her airway will become stronger as she gets bigger. We continually pray that she will not have to have a trach. She definitely is a girl with her own agenda, she wants what she wants and will do whatever she needs to get the attention. We love her very much and are grateful for her feisty personality. Rachel's updated weight is 7 pounds 3oz.

Rachel in her "My First Christmas" outfit from Grandma Claudia



Haley continues get better after her surgeries. Her bowels seem to be working better now. Today she started on my breast milk again for the first time in months and is tolerating it well. She is pooping, which is a great sign that her bowels are working and her abdomen is no longer distended. Dr. Bloss was right about her not having an obstruction. All she needed was time to heal which she is doing well at right now. She is such a tough little girl, she always pulls through these surgeries very well. We continue to pray to the Lord to help Haley's eyes so that she will have some vision to be able to get around and to not live in total darkness. If not we will except the Lord's will and move forward and enjoy every moment with her and Rachel. Haley is such a beautiful little girl as well, we marvel at how strong she has been. Haley's updated weight is 6 pounds 10oz.

Haley in her "My First Christmas" outfit from Grandma Claudia



This Christmas season we are eternally grateful to our Heavenly Father for His matchless love. We are so thankful that He sent His Son Jesus Christ to this earth to atone for all of us. We are in awe of the love our Savior has for us. This Christmas season we give thanks for all of our beautiful children that Heavenly Father has given us stewardship for. Our lives have been so enriched because of each precious child we have. While it has been a difficult year, we are grateful for the opportunity to grow and learn from our struggles and challenges. Our family proclaims to all the world that God does live, that His holy Son even Jesus Christ lives and loves all of us. We know that because of our Heavenly Father and the Savior we can overcome challenges that would seem impossible otherwise. We know that Heavenly Father has been at our side the whole way through our journey this year. We have had many nights when we had felt there is no way we could go on. On those nights I know that we did go on because of a kind and loving Heavenly Father who picked us up and helped us move forward. We are so grateful for the knowledge that families can be together forever. Such knowledge has made it easier for us to bare the loss of each one of our children. We know that only because of the Atonement of our Savior that this is possible. We owe everything to Him and the Savior, we love them and desire to be more like them this Christmas season.

Thursday, December 24, 2009

1st Christmas Eve

Well for Christmas Eve, we spent time at Texas Children's hospital waiting for Haley to get out of surgery. Her retinopathy of prematurity had gotten worse and she did have to have more eye surgery, but this time on her right eye. Right now her retina in her right eye is attached, but her vision will be worse than we thought before. Things can get worse with her right eye just like the left did, but we are hoping that won't happen. The doctor is hoping that Haley will at least have enough vision in her right eye to be able to get around. She will also need glasses for the right eye. Haley of course tolerated the surgery well. She again came out of the operating room on a nasal cannula. She is such a trooper! This surgery was her 7th surgery. That is a lot of surgeries for someone not even 5 months old yet. Haley's updated weight today is 6 pounds 9oz. Haley will get to start back on feeds in the next day or two.
Our Christmas eve with Rachel was spent holding her and loving her as usual. Rachel loves to be held and she would love it if someone held her all day. She is a cuddle bug. I wish I could hold her more than I get to now. Today we got the results back on Rachel's gastric emptying scan and it showed her gastric motility is on the border of normal to fast. This means her gastric motility is good. Her formula is moving through her GI tract well. We have not gotten to talk to the GI doctor yet about the results, but we are pleased with the results. Rachel's weight is 7 pounds 5 oz. We don't think this weight is accurate because yesterday she weighed 6 pounds 13oz. I don't believe she could have gained ~9oz in one day. Rachel and Haley are weighed every night and it always seems they gain some weight one night and the next night they lose weight. So we will see what Rachel weighs the next night...

Rachel with all the tape and tubes off her face. This picture is a spitting image of me when I was a baby. Rachel is also giving us the longhorn sign. Go Longhorns!






My best friend Melody and I with Haley on Wednesday Dec 23. This was the first time she had gotten to see the girls.



Melody holding Haley

Wednesday, December 23, 2009

Ups and Downs

The last couple of days the girls have had some ups and downs. Haley had to go back on the nasal cannula for a little bit of extra oxygen. Haley's abdomen also got really distended. She had some x-rays to determine the cause and the x-rays showed a lot of gas/air in her intestines. The doctor was concerned that she had another obstruction. Dr. Bloss (surgeon) looked at the x-rays as well and he said that there was some swelling where he re-connected her bowels and that swelling was preventing the air from moving through the intestines. Today her abdomen looked better and she was more comfortable. We were pleased with that. We are also happy to announce that she pooped! This means things are starting to move along in her bowels. Haley also had a follow up eye exam this evening and unfortunately the Doctor is concerned about her right eye and there fore she will have to go under general anesthesia again for a more in depth look into her right eye. She will also most likely have some surgery done on that eye, but we will see what tomorrow brings. We pray that her right eye will be ok and she will be able to have some vision. I feel terrible that she has to go through another surgery and especially on Christmas eve. Rachel had her gastric emptying scan this afternoon. We don't have the results of this scan yet, but Rachel tolerated the procedure well. Rachel had her follow up eye exam on Tuesday and her eyes are doing well. She now doesn't have to have another exam for a month. We continue to trust in the Lord for our two little girls. We know that He has taken care of them, and will continue to. We hope more than anything that Haley will have some sight, but if not we will except what happens and move forward in life. We know with surety God can perform miracles, our two beautiful little girls are living proof of that. The Lord can heal Haley's eyes if He sees that that is what is best for her. We only can see a piece of the picture but God sees the whole picture. He will do what is best for Haley, there is no question in my mind that He will. We are trying to except his will with out questioning or resistance. Thanks be to God for all that he has done for Rachel, Haley, Thomas and I. We truly have been blessed. We owe all that we have to our Heavenly Father, for through him and our Savior all things are possible.

Haley with her cute Christmas hat



Rachel wide awake. Look at those beautiful eyes.

Sunday, December 20, 2009

Pressing Forward

Haley has had a pretty good weekend and is recovering well after her surgery. She is starting to have some good bowel sounds which is very good and we are happy they have returned so soon after the surgery. Dr. Abrams told us that he will most likely restart her feeds on Monday. I have some breast milk stored in the deep freezer for Haley. I saved some for when she restarted feeds after her surgery. Breast milk is so much gentler for her sensitive tummy. I'm glad I was able to save some for her. She has done really well considering she had surgery only three days ago. She did have to go back on the nasal cannula for just a little flow of oxygen. She was having some desaturations and needed some extra oxygen. She will be off the oxygen again in the near future. We can tell Haley is feeling better. She is acting more alert and awake. We hope and pray that this surgery was the last hurdle for her to come home. We also look forward to her getting back to taking a bottle again. We hope that she will be home with us sooner rather than later. She is such a precious little girl. We love and cherish her very much. Haley's updated weight is 6 pounds 8oz.

Haley with her Santa hat



Little Rachel is no longer smaller than Haley, in fact she is about four to five ounces bigger than Haley. Rachel will have a busy week coming up. On Wednesday, she will be having a gastric emptying scan and a test to check her reflux. She will be transported to Texas Children's Hospital for these tests and then transported back to Woman's Hospital. A gastrointestinal doctor will determine if she needs a g-tube or fundo and also be able to help us get a better idea about the trach. So the girls are pressing forward. We are so thankful for their progressions. For being so little they sure are strong. We love them very much!

Rachel

Thursday, December 17, 2009

Haley's Surgery

Haley finally had her surgery today to have her bowels reconnected. She came through it like the little fighter she has always been. After Dr. Bloss performed her surgery she was able to come off the vent before she left the recovery room. She didn't have to have any help with her breathing at all nor did she need any extra oxygen. Before her surgery as we walked with her down to the surgical suites she was wide awake looking as cute as ever. She didn't have a clue that she was going to go through her 6th surgery, but she did very well and is resting tonight. We love this little girl so very much, we hope and pray this is the last time she will have to go under for surgery. We are starting to sense that her time in the hospital is coming to an end. We do not know when she will be home, but we are starting to feel it will be sooner than later.

Rachel has had a pretty good day today as well. We weren't able to spend as much time with her today due to her sister Haley's surgery. Thomas was able to spend some time with her and hold her this afternoon. She continues to plug along on her cpap. She seems to be a little more comfortable on the cpap prongs she is currently on. She is such an active little girl. She loves to sit in her bouncy chair and just look around. The nurse was telling us that she loves to look out her window when she is sitting in her bouncer. She is getting bigger by the day. She weighed 6 pounds 12oz tonight. Her growth has really picked up. We continue to pray for her to out grow the floppy airway and reflux.

We are grateful for our beautiful little girls. They both bring so much happiness to Thomas and I. We hope that all will work out for them both, and that they both will be home with us as soon as possible. Thanks to all the physicians and nurses for their help and loving care with our little girls.

Haley after her surgery



Wednesday, December 16, 2009

Growing!

The girls are getting bigger everyday. The girls are weighed in the evening and tonight Rachel weighed 6 pounds 9 oz!!! Wow she is just gaining weight so well now. Haley still weighs 6 pounds 6oz. Her weight gain seems to have slowed down. Once her bowels get reconnected and she gets back to full feeds, I'm sure she will gain weight much better. Haley drank 12.5cc's of formula from the bottle today. She seems to like it and is getting the hang of it really well. Haley also had a follow up eye exam and her right eye is stable and the retina is attached. Her left eye the retina is not attached. The eye doctor said there was nothing else that can be done to fix it. We are sad that she won't be able to see out of her left eye, but are very grateful that her right eye will be ok. I'm hoping that she will be able to see her mommy and daddy and know what we look like.

Here are more pictures of the girls. We take so many pictures of them everyday. I think we have over 1,000 pictures. So enjoy!

Haley looking pretty in pink



Haley without the nasal cannula



Rachel loving her pacifier



Grandma holding Rachel

Tuesday, December 15, 2009

More progress - Bottle feeding!

We are so proud of Haley! For the first time today, she drank formula from a bottle. She took 7 cc's and did really well for doing this for the first time. The occupational therapist will continue to help her as she progresses to being able to take all her formula by a bottle. The other big news of the day is that the MD's took Haley off the nasal cannula today, and she has done just fine thus far without any extra oxygen. Haley's surgery is still scheduled for Thursday and she will be intubated for that of course, but we hope she will be able to get back to where she is now soon after the surgery. Haley's weight today was 6 pounds 6oz. Haley is such a sweetheart. She does so well with all the challenges she has been facing. We love Haley so very much and are so grateful to be able to enjoy everyday with her and to see her progress so well.

Haley before her nasal cannula was taken off



Haley the chunky monkey



Rachel has had a great day today as well. She continues to move forward with her progression. Tonight I was able to hold Rachel and almost the whole time her CPAP prongs were not in her nose. Surprisingly she did well and her oxygen sats stayed up in the 90's for a good 45 minutes, but then she had to get back on her CPAP as her oxygen sats started to drop. We will give Rachel about another month to see if she can gain enough weight to where she out grows the floppy airway, and see what her reflux situation is. We will make a decision then about the trach and a g-tube/fundo. We hope more than anything else that she just needs a little longer to out grow these issues. We will implore the Lord for his help and guidance. Rachel is growing. She is up to 6lbs 7oz. She has passed Haley up by 1 oz. Rachel has such a strong feisty spirit about her. She is a fighter and we know she will get through these challenges she is facing as well. We love her so very much!

Mommy holding Rachel without her CPAP on



Rachel getting a break from the CPAP. She is loving it!!

Sunday, December 13, 2009

Continual progress

The weekend has come and gone just like that. Our beautiful little girls continue to progress. They are both steadily growing and seem to be getting stronger each day. We are so grateful for their beautiful little spirits. The joy that Thomas and I get each time we are with them is beyond description. We feel truly blessed to have both our girls here with us. We know they have been through so much, but we also hope they won't even remember it at all one day.

Rachel is doing reasonably well this weekend. She had her hearing screen yesterday. She passed in the right ear, but the left ear they couldn't get an accurate reading due to the noise from the cpap. They will check again later on both ears. Rachel is still on the dreaded cpap. They changed the cpap prongs she has been on. She changed from Argyle to Hudson prongs. Basically the Hudson prongs are bigger and a little longer. They fit in Rachel's nose better and don't move around as much. She really was having a hard time on the Argyle prongs. She seems to like the Hudson ones better. Rachel is weighing in at 6lbs 3oz. We hope she continues to grow because with her continued growth, some of her issues such as reflux and the floppy air way will get better. With time she will out grow those problems. Rachel just never quits. She will fight tooth and nail for what she wants. We love and cherish her so much. She is so darn cute.

Rachel with the Hudson CPAP prongs



Our Haley is such a calm baby and loves to sleep. She is not all that fussy unless her diaper is wet. Haley will be having a big week this week. She is scheduled for this Thursday to have her bowel reconnected. As Dr. Bloss does the surgery on her bowel, the opthomologist will also look at her eyes again for a follow up while she is under anesthesia. Haley continues to grow. She weighs 6 pounds 6oz. Haley is a little fighter. She seems to come through all these surgeries really well. Haley is such a beautiful little girl as well. We love and admire her very much. She just seems to plow forward and to over come all that stands in her way. Despite the challenges she will have with her vision, we know that will not stop her from being happy and living a good life. She and Rachel will always be loved and will always know they are loved by their mom and dad and their savior Jesus Christ.

Haley

Friday, December 11, 2009

Tests, Tests and more Tests

What a busy week it has been for both the girls. Haley had an especially busy past couple of days. She had some tests and exams done. She had an upper GI and small bowel follow through yesterday. It didn't show any obstructions or strictures like the other test showed. We are happy about this and are so glad they did this test to make sure. Her bowel surgery is still scheduled for Thursday December 17. She also had the more in depth hearing test today and it showed she has mild hearing loss. We talked to the doctor who said that most likely she has a little fluid in her ears due to being in a horizontal position since birth. We feel that her ears will clear up and she won't have any hearing loss. She had a follow up eye exam also today. Her right eye is doing ok and starting to look better. Her left eye still is not so good. There isn't any more surgery they can do to fix it. We are so grateful though that her right eye is ok. We pray that she will be able to see well enough out of that right eye to see the beauties of the world. Haley had a head ultrasound as well which showed no changes. To top it all off, she also got her immunizations today. Haley has been through a lot the past couple of days, but she handled all the tests well. She is such a trooper though she was worn out. When we visited her this evening, she was sound asleep. Rachel is just hanging out. The big news with her is that she is now 6 pounds 2 oz!!! She has finally made it to 6 pounds. We are so excited. We know that the more she grows the sooner she will be able to get off the cpap and not have to get a trach. I forgot to mention that Rachel had her follow up eye exam on Tuesday and her eyes are doing well. No problems there. Rachel should be getting her hearing test soon.

Rachel wide awake. She's waving hello to everyone.



Haley fast asleep after a busy day of tests.

Wednesday, December 9, 2009

Rescheduled

Haley won't be having her surgery tomorrow after all. The doctor decided to check her bowels with barium to check for any strictures or obstructions. Well they did find a couple more obstructions. The MD's seem to think it's a little scar tissue from the previous surgery, but they are not completely sure. They decided to reschedule the surgery to next Thursday (December 17) since Haley did have a recent central line infection. The doctor wanted to give another week of antibiotics to get that infection completely clear. So we continue to wait again. We hope that this finding of more obstruction is not serious and will be able to be fixed during her surgery next week.
Rachel is doing good. Nothing new with her. She is completely recovered after her bronchoscopy. We are not having to make a decision soon about the trach, fundo/g-tube until Rachel gets bigger. When she does get bigger she may not even need these things. We hope and pray that her rate of growth will increase and she will out grow her tracheomalacia (floppy airway). So we continue to wait with her as well. We love our little girls so very much and are so blessed to have them. We hope that these challenges they are facing will soon come to pass and they will be able to move forward.

Tuesday, December 8, 2009

Hopeful!!

So Rachel had her bronchoscopy this morning by an ENT surgeon. The procedure didn't take long at all. What they found was that Rachel has a "floppy" airway. This is why she couldn't breath on the nasal cannula. Her airway would close off without the pressure from the CPAP. Rachel got through the procedure like a champ. She wasn't intubated so when we saw her after the procedure she was back on the CPAP. The ENT surgeon said that Rachel's airway will become less floppy with time and as she grows. This could take up to a year so we were told that Rachel may need a trach especially if we want to get her home sooner than later. Also they think she may need a G-tube Fundo as well. We hope and pray that neither of these procedures will be needed. The most important thing is to help Rachel grow. As she grows so will her airway, and hopefully the reflux will some how go away a she gets bigger. Time will only tell for Rachel.

Haley is scheduled to have her bowels reconnected on Thursday. She will also have her eyes examined while she is under general anesthesia. She had her hearing screening today and they said she failed it in both ears. I was very concerned about it, but the neonatologist told me that it was just a screening. Lots of babies fail the screening and have no problems with hearing at all. He said there could be several factors involved, so don't put to much stock into it. The real hearing exam will come hopefully within the next few days. The doctor stated he would be extremely surprised if Haley is deaf.

We continue to fast and pray for our precious little girls. They both have been through so much already in their young lives. Thomas and I know that what will happen is for a reason. We do hope and pray that some how Rachel doesn't need a G-Tube, a fundo, nor a Trach. We will continue to pray that by some miracle she out grows these issues very soon. God will take care of our girls regardless of what they have to go through. We are so grateful for the blessings that have come to us through our beautiful little girls.

Monday, December 7, 2009

Anxiously Awaiting

The girls both had a good day today. There was not a whole lot that went on today with either of them. Rachel continues to plug away on her cpap. She fights it everyday. The bronchoscopy is tomorrow at 8:30 am. We are nervous but feel strongly all will be ok with her. Please say a special prayer for her.

Rachel Wide Awake



Rachel Smiling at Mommy and Daddy





Haley is doing relatively well. There was some talk today about her going into surgery on Wednesday to reconnect her bowel. We hope they will follow through with this, so that she can have that behind her. Haley had yet another eye exam this evening from the pediatric ophthalmologist surgeon. He said the left eye's retina appears to be attached since he reattached it last week during her surgery. We are grateful for the positive news. She won't have good vision in that eye as we were told by the doctor. He said if her retina stays attached she might be able to see shadows or light. The right eye they are monitoring very closely because it is starting to build up scar tissue which can either heal on its own or can detach the retina. They will continue to monitor it closely. So we continue to wait and Haley will stay at TCH. Please have a special prayer for her as well, so that in her right eye her retina will not detach. We will continue to trust in the Lord. He will do what is best for our family. I know that Heavenly Father will continue to help our family. He has always been there for Thomas and I and the girls. I know with absolute knowledge that God can heal Haley's eyes and Rachel's breathing struggles. Does that mean he will heal them from these infirmities - no, but he can if it is his will. I will except and never question the Lord's will. He is in charge if Haley is to see and if Rachel is to avoid a trach or a G-Tube / Fundo. I have complete and absolute trust in God our Eternal Father. I know that what will come will be for our good and we will get through the challenges that lie ahead. I am so grateful for my Heavenly Father and His beloved Son Jesus Christ, for it is through them that I can carry on and continue to move forward in such difficult times as these.

Haley With One Eye Open



Haley laying On Daddy's Shoulder

Sunday, December 6, 2009

Christmas Tree

Here is our Christmas tree this year. We actually put this up the day after Thanksgiving. To celebrate all of our precious children, I bought some angel ornaments and wrote each of their names on it and hung them on the tree. All of our beautiful angels will always be remembered during the Christmas season with these ornaments. I wish the girls were home to enjoy the tree. They will for sure be home next Christmas and what a wonderful time it will be. What a wonderful holiday season this is. A time to celebrate the birth of our beloved savior Jesus Christ.

Our Christmas Tree



The angel ornaments with all our children's name on them.



These two cute little ornaments were a gift from Grandma. Rachel and Haley's names are on them.



Now for the update on the girls. Rachel is gaining weight! She is 5 pounds 14oz! She is almost to 6 pounds. We are excited. She had a good day today. Daddy got to hold her tonight. She was so comfortable and enjoyed her pacifier. When she is awake she is becoming more alert and likes to look around. Haley is doing good despite the infection she has. The bug that she has is not a serious one according to the doctors. They are giving her antibiotics to fight it. She is a fighter and doesn't seem to be affected by the infection at all. I held her tonight and she loved it. She also enjoyed her pacifier. She gets upset sometimes when it is taken out of her mouth. Haley has lost some weight. She is 6 pounds even. The doctor put her on a diuretic because her lungs were a little "wet" and she was retaining some fluid. So the weight she lost was just fluid. Haley is off the TPN (IV nutrition) for now. Her feeds have been increased. Once she gets her intestines reconnected she will have to go back on TPN, but for now she gets a break from it. What a blessing these girls are to us. Each and everyday we visit them, we are in awe of their precious spirits. They bring such love to our lives.

Haley wearing her "I love Daddy" onesie. Thank you to Natalie for this cute outfit.



Haley is starting to learn how to hold her pacifier.



Rachel with her eyes open



Rachel enjoying her pacifier

Friday, December 4, 2009

Happy 4th month!!

The girls are 4 months old today! Wow how fast it has come. We are so grateful that they are here with us. Like I have said before they are truly miracles that have blessed our lives so very much. We have enjoyed these first 4 months with them. We look forward to many more months with them. What joyous times to come.

We found out today that Haley unfortunately has another infection. We were hoping she could stay infection free for a while, but I guess not. Since she still has that PICC line in, she is susceptible to infections and will be until she can get that line out. Since she will be having her bowel surgery in the near future, she will unfortunately still need a PICC line. Haley is strong and she will make it through this. Haley weighs 6 pounds 4oz.

Haley the sleeping beauty



Look at all those rolls on her arms!



Pretty in pink



Rachel is doing well. She fights the CPAP every day. She hates it so much and is always moving her head to wiggle the prongs out of her nose. She's smart and knows what she is doing. She gets so mad when the prongs are put back into her nose. She's growing well and is now 5 pounds 10oz.

Rachel the sleeping beauty



I love this picture. Just wish the CPAP tubes weren't in the way of her angelic face


This picture shows she is starting to get some fat on those legs

Wednesday, December 2, 2009

40 Weeks!!!

Today the girls hit 40 weeks gestation! It didn't seem like this day would come, but it did and it came faster than expected. What little miracles these girls are. They have endured so much, but remain strong and continue to fight. The Lord's hand is evident in their lives. He is comforting them and loves them so very much just as we love them. We are closer each day to the day they get to come home, but we still don't have a date of when that will happen.

Haley - She recovered well after her surgery. She has been sleeping a lot. When she is awake, she has not been wanting to open her eyes. Who would after all she has been through with her eyes? Haley continues to gain weight well. She is 6 pounds 4 oz. There is talk about getting Haley's bowel reconnected soon. Her bowel surgery was almost 2 months ago. We look forward to getting her reconnected so she can get on the road to recovery and come home.

Haley and Mommy





Rachel - Is as feisty as ever. She is so strong. She can move her head around well and she can also raise her self up. She likes to dig her feet in her bed and lift her self up. We are going to have to tie her down! She is getting a bronchoscopy next week and hopefully they can get an idea of why she didn't tolerate the nasal cannula. Rachel is gaining weight as well. She is 5 pounds 9 oz. We can't wait to when she makes it to 6 pounds. She moves around so much she burns her calories up. Rachel is now on formula (Neosure) as she is gaining weight much better on it than on the breast milk. I'm thankful she was able to get breast milk as long as she did.

Rachel snoozing on daddy's chest

Tuesday, December 1, 2009

Hoping for a miracle

The past few days have been busy and we have not been getting much sleep. Haley had another eye surgery late last night. She was in surgery for four hours. The doctor wanted to get a better look at her eyes, but ended up doing more surgery on her left eye to try to save it because he found that her left eye (retina) was detached. The Ophthalmologist seems to think she will have less than a 5% chance of seeing out of her left eye. They are now worried about her right eye as well. They did not operate on it since there was nothing they can do. Only time will tell. They will keep close tabs on her right eye in the coming weeks. We still aren't sure how long it will be before we can transfer Haley back to Woman's. We will continue to pray for Haley's eyes and leave it in the Lords hands. We are hoping for a miracle. She was able to come out of surgery extubated and back on the nasal cannula. We were pleased about that. She will pull through this like the little champ she is. She is a very special little girl and we know that she will be strong despite not being able to see.

Our beautiful Haley



Rachel was seen today by an ENT (ear, nose and Throat) doctor. The doctor did not do the bronchoscopy, all she did was a consult. The doctor will perform the bronchoscopy on December 8th. We hope that she will not have reflux or any obstruction. We are proud of Rachel's progress otherwise. She is finally growing a little. She is up to 5lbs 7oz, which Means she gained an ounce a day last week. That is what the doctors want to see from her each week. We are so grateful for our precious little girls, they have such strong little spirits. We love them both more than words can express. We will continue to pray for their progress and development.

Feisty little Rachel with a death grip on that pacifier

Saturday, November 28, 2009

Waiting...

Rachel and Haley both have seemed to have had a great day today. Haley continues to plug away on her nasal cannula. She seems to tolerate the nasal cannula much better than the cpap. She seems more relaxed on the cannula. The MD's have mentioned moving Haley to level 2 NICU which brings music to our ears. Haley will have her eye exam tomorrow to see how her left eye is progressing. If it looks good hopefully they will let her return to woman's next week, if not they said they would move her to the level 2 NICU nursery. We are just waiting to see where she will go. We are so grateful for Haley's progress thus far, she is growing and now weighs 6 pounds 1 oz. She is such a beautiful little girl.

Rachel is still fighting the CPAP. She doesn't like it at all. I think Rachel would love to throw that cpap out the window, but we know it is what she needs right now until they figure out why she can't tolerate the nasal cannula. Rachel will be examined on Monday by an ENT doctor (Ear, Nose, and Throat MD)to see what is going on. They will do a bronchoscopy which is a technique of visualizing the inside of the airways. We hope and pray that it won't show an obstruction or show she is micro-aspirating due to her reflux. If there is an obstruction that means she would have to have a tracheotomy. If it shows that she is aspirating due to her acid reflux then they would probably have to do a G-Tube and Fundo. We will pray that all will go smooth with this procedure and she won't have any of these problems. We would invite all to pray on her behalf. We are so grateful for both of our little girls. Rachel and Haley seem to posses such a strong will to live. They continue to progress and develop and grow. Rachel seems to be a little behind on her growth than Haley but she will get there. Rachel weighs 5 pounds 5oz. We love and admire both our girls who continue to amaze us each day. They are our little miracles.

Thursday, November 26, 2009

Happy 1st Thanksgiving

The girls first Thanksgiving was good. It would have been nice for them to have been at home, but in time that will come and next year they will be home for Thanksgiving. Rachel unfortunately had to go back on the CPAP yesterday. She is just not strong enough to breath without the extra pressure the CPAP gives. She will have an ENT doctor come and check her out on Monday. Neonatologists are thinking maybe her airways are somewhat narrow that she isn't getting the air flow through when she is on just the nasal cannula. That is why they have called in an ear nose and throat doctor. In time we think as she grows, she will be able to go back on the nasal cannula. Rachel had some tests (Echo, EKG) done to check her heart and all the tests were good. She has gained weight and she is now 5 pounds 4 oz. Rachel is starting to catch up with Haley who is 5 pounds 7 oz. Haley didn't have her eye exam on Wednesday. The eye doctor said he will check her Sunday afternoon. Haley is doing well on the nasal cannula. So overall the girls are doing well. This Thanksgiving we are so very grateful for our precious daughters. They have been such a blessing in our life. We love and cherish our little Haley and Rachel. We give thanks to the Lord for these two beautiful little girls.

Rachel laying on daddy's belly



Rachel just chilling in her crib

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Haley without the pacifier



Haley and that pacifier

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