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.
Saturday, November 28, 2009
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
Haley without the pacifier
Haley and that pacifier
Rachel laying on daddy's belly
Rachel just chilling in her crib
Haley without the pacifier
Haley and that pacifier
Tuesday, November 24, 2009
Look who's on nasal cannula!
Today Haley was put on the nasal cannula! We are so proud of her. She is doing really well on it. We are so happy that both our girls are on the nasal cannula. They sure have come a long way. The next thing we would like is for them to be back together at Woman's hospital. We are just waiting for the ok from the eye doctor. Haley may have another eye exam on Wednesday (11/25). If the doctor is not able to see her on Wednesday then he will for sure see her on Sunday. So hopefully she will be able to be with her sister next week. Rachel is doing well on her nasal cannula. She seems so much more comfortable and was just sleeping soundly tonight.
Haley now with the nasal cannula. That pacifier always seems to be in her mouth when we take pictures. She just loves it!
Haley now with the nasal cannula. That pacifier always seems to be in her mouth when we take pictures. She just loves it!
Missing Mom!
Tonight was kind of a sad night for me personally. I was not able to visit the girls this evening because I have had a mild cold today. I did not want to risk going into the NICU with that so I decided to stay home this evening. Thomas went by himself to see our precious girls. Thomas was able to hold both Rachel and Haley for a little while this evening.
Rachel was moved from her cpap to a high flow nasal cannula today. Dr. Hernandez one of our neonatologists decided to make the move because Rachel has been fighting the cpap a lot. The doctor thinks that she has been fighting it so hard that she has burned way too many calories thus her growth the past week has been hardly anything. It is so important for Rachel to gain weight, it is what will help her to over come some of the problems she has like chronic lung disease. She was on the vent for so long that she has some scaring of the lungs, but the good thing about that lung in an infant continually grow new lung tissue up until a certain age. Rachel has done very well thus far on the high flow cannula. Her O2 saturations have been 100% all day on 50% of Oxygen concentration. She has had a pretty good day over all. We hope she never has to go back on the cpap.
Rachel on the nasal cannula again
Haley is plugging along, she continues to grow she is now 5lbs 7oz. She is still on her cpap with a pressure of 5, the lowest pressure there is before going off cpap. She also seems to be very annoyed with the cpap. Thomas was holding her tonight and she was constantly moving her head to get the cpap off her nose. The nurse told Thomas this evening that they may try her on a high flow nasal cannula tomorrow, we shall see. Haley is obsessed with her pacifier. She will calm down immediately once she gets her pacifier in her mouth. That girl can suck too, she doesn't play around when it comes to her pacifier. I think she is going to be one we have trouble getting her off of the pacifier when the time comes.
Haley laying on her tummy
We continue to be in wonder and amazement with the progress that our girls have made. They are such beautiful little girls, with such powerful spirits. We thank our Heavenly Father everyday for Rachel and Haley, we are constantly asking Heavenly Father to watch over them and to help them grow and develop. I know that God has been there every step of the way for all our precious children. He has and will continue to help Rachel and Haley over come the odds that have been placed before them. We know what statistics say regarding children who are born this prematurely, but one thing I do know in no uncertain terms is that God does not work in statistics, He will do what He knows is best for us and the girls. I have an absolute sureness of that. I am so thankful for the Gospel of Jesus Christ which has truly sustained Thomas and I in the difficult times we have been through. I know Thomas and I have been humbled by all the events that have unfolded the past few months. It has been painful and it has been difficult at times to bare, but because of a loving Savior who has come to this earth and has born our grieves and sorrows, He has helped us through as no other person can. We are indebted to him for that, we love him and desire to be more like him in all that we do. Thanks to God for good nurses and Doctors who have helped our girls along the way.
Rachel was moved from her cpap to a high flow nasal cannula today. Dr. Hernandez one of our neonatologists decided to make the move because Rachel has been fighting the cpap a lot. The doctor thinks that she has been fighting it so hard that she has burned way too many calories thus her growth the past week has been hardly anything. It is so important for Rachel to gain weight, it is what will help her to over come some of the problems she has like chronic lung disease. She was on the vent for so long that she has some scaring of the lungs, but the good thing about that lung in an infant continually grow new lung tissue up until a certain age. Rachel has done very well thus far on the high flow cannula. Her O2 saturations have been 100% all day on 50% of Oxygen concentration. She has had a pretty good day over all. We hope she never has to go back on the cpap.
Rachel on the nasal cannula again
Haley is plugging along, she continues to grow she is now 5lbs 7oz. She is still on her cpap with a pressure of 5, the lowest pressure there is before going off cpap. She also seems to be very annoyed with the cpap. Thomas was holding her tonight and she was constantly moving her head to get the cpap off her nose. The nurse told Thomas this evening that they may try her on a high flow nasal cannula tomorrow, we shall see. Haley is obsessed with her pacifier. She will calm down immediately once she gets her pacifier in her mouth. That girl can suck too, she doesn't play around when it comes to her pacifier. I think she is going to be one we have trouble getting her off of the pacifier when the time comes.
Haley laying on her tummy
We continue to be in wonder and amazement with the progress that our girls have made. They are such beautiful little girls, with such powerful spirits. We thank our Heavenly Father everyday for Rachel and Haley, we are constantly asking Heavenly Father to watch over them and to help them grow and develop. I know that God has been there every step of the way for all our precious children. He has and will continue to help Rachel and Haley over come the odds that have been placed before them. We know what statistics say regarding children who are born this prematurely, but one thing I do know in no uncertain terms is that God does not work in statistics, He will do what He knows is best for us and the girls. I have an absolute sureness of that. I am so thankful for the Gospel of Jesus Christ which has truly sustained Thomas and I in the difficult times we have been through. I know Thomas and I have been humbled by all the events that have unfolded the past few months. It has been painful and it has been difficult at times to bare, but because of a loving Savior who has come to this earth and has born our grieves and sorrows, He has helped us through as no other person can. We are indebted to him for that, we love him and desire to be more like him in all that we do. Thanks to God for good nurses and Doctors who have helped our girls along the way.
Saturday, November 21, 2009
Update on the Girls
Here's the update on the girls the past couple of days.
Haley - Well Haley had her follow up eye exam Friday afternoon. She cooperated, but the doctor still couldn't see a lot due to her left eye still cloudy and still trying to heal. Her right eye is looking good. He did an eye ultrasound on her left eye and it appears that her retina is attached in all locations in the eye. We are happy about that. So the eye doctor will look at her again either Wednesday before Thanksgiving or next Sunday. She will be staying at Texas Children's Hospital until then. As for the CPAP, she is being weaned down on the pressures and she may be tried on the nasal cannula next week. Her oxygen requirements have been low, from 26% to room air (21%). Her feeds are being slowly increased and the TPN is being decreased. She continues to grow and gain weight. So overall she is doing well.
Mommy holding Haley
Rachel - Rachel continues on the CPAP. They will start weaning her pressures tomorrow. Not sure when she will try the nasal cannula again. Hopefully sooner than later because little miss Rachel is hating the CPAP. She is constantly trying to get it off her nose. When Rachel lays on her belly she loves to lift and move her head all around, but she can't with that CPAP. She gets so mad. Rachel is strong. She lifts her head well. Rachel has finally made it to 5 pounds!!
Rachel after getting new tape on her cheeks to hold the CPAP.
The two pictures below show how similar looking the two girls are.
Here is Rachel after they took off the old tape holding her CPAP. I love seeing them with everything off their face.
Haley sleeping in my arms.
Haley - Well Haley had her follow up eye exam Friday afternoon. She cooperated, but the doctor still couldn't see a lot due to her left eye still cloudy and still trying to heal. Her right eye is looking good. He did an eye ultrasound on her left eye and it appears that her retina is attached in all locations in the eye. We are happy about that. So the eye doctor will look at her again either Wednesday before Thanksgiving or next Sunday. She will be staying at Texas Children's Hospital until then. As for the CPAP, she is being weaned down on the pressures and she may be tried on the nasal cannula next week. Her oxygen requirements have been low, from 26% to room air (21%). Her feeds are being slowly increased and the TPN is being decreased. She continues to grow and gain weight. So overall she is doing well.
Mommy holding Haley
Rachel - Rachel continues on the CPAP. They will start weaning her pressures tomorrow. Not sure when she will try the nasal cannula again. Hopefully sooner than later because little miss Rachel is hating the CPAP. She is constantly trying to get it off her nose. When Rachel lays on her belly she loves to lift and move her head all around, but she can't with that CPAP. She gets so mad. Rachel is strong. She lifts her head well. Rachel has finally made it to 5 pounds!!
Rachel after getting new tape on her cheeks to hold the CPAP.
The two pictures below show how similar looking the two girls are.
Here is Rachel after they took off the old tape holding her CPAP. I love seeing them with everything off their face.
Haley sleeping in my arms.
Wednesday, November 18, 2009
Love that CPAP
This morning Rachel made another big step in her progression - she was moved into an open crib. She was moved to the crib since she was getting too hot in the isolette. She is so little in her new big crib. Rachel also decided to take a step back in her progression. She had to be put back on the CPAP. After we arrived and was about to hold her she dropped her oxygen saturations. She didn't come back up so the doctor ordered to put her back on the CPAP. Rachel won't stay on the CPAP for long she will go back on the nasal cannula, but like the doctor said she just needs to get a bit bigger and stronger. She tried and just like the couple of times she tried the CPAP at first, she finally got it.
Rachel in her big crib and before going back on CPAP
Rachel back on CPAP
Haley continues to plug along, she has been down to room air at times (21%) and seems to be doing great that way. She loves her pacifier. I think it is her security blanket so to speak. She goes to town on it when she is angry or bothered. She has gained a little weight, she is now up to 5lbs 6oz. We continue to pray that her up coming eye exam on friday goes well and that they will not have to put her under anesthesia again just to check how the surgery worked. We continue to pray that her eye is doing better and that no more surgeries are necessary.
Haley Doing Her Thing!!
Rachel in her big crib and before going back on CPAP
Rachel back on CPAP
Haley continues to plug along, she has been down to room air at times (21%) and seems to be doing great that way. She loves her pacifier. I think it is her security blanket so to speak. She goes to town on it when she is angry or bothered. She has gained a little weight, she is now up to 5lbs 6oz. We continue to pray that her up coming eye exam on friday goes well and that they will not have to put her under anesthesia again just to check how the surgery worked. We continue to pray that her eye is doing better and that no more surgeries are necessary.
Haley Doing Her Thing!!
Tuesday, November 17, 2009
Beautiful Eyes
Today the girls had their follow up eye exam. They get their exams every Tuesday until the doctor is satisfied that they are in the clear. Rachel's eyes are doing good and are progressing as they should. Haley had her's checked by the eye surgeon who did surgery on her last week. He said her right eye is looking good, but he couldn't get a clear look at her left eye since Haley was very fussy and mad and wouldn't stay still. He is going to check her again on Friday. We hope and pray he will be able to get a good look at her left eye and she will be able to be transferred back to Woman's to be with Rachel. If he can't get a good look then Haley will have to be intubated and sedated again. Rachel is still doing well on the nasal cannula. She is growing as well. She is now 4 pounds 15 oz. We are so glad to finally see her gain some weight. As for Haley so far the blood cultures that were done yesterday have come back negative for an infection. We are happy about that. She did good on the cpap today without any apneas or bradycardia's. It seems she just needed to get used to the cpap again after being on the vent again. We are so eternally grateful for our two precious little daughters. They are so adorable and we can't help but to feel their special spirits. We continue to pray for their safety and health. I know I have felt the tender mercies of an all knowing and wise Heavenly Father through out this whole experience. While there have been difficult and often times I felt I could not bare any more, our Savior has been there to lift me up and push me forward. We love Rachel and Haley so very much, we feel blessed to be called their parents. Thanks be to God for such beautiful and precious children. We know that we will be accountable to Heavenly Father and his Son Jesus Christ for our little girls. We have no greater desire than to raise our girls the way Heavenly Father would have us raise them. I know he will help us along the way because I know we will need all the help we can get.
Monday, November 16, 2009
Nasal Cannula!!
What a wonderful day! Rachel is officially off her cpap and on nasal cannula. We are so thrilled with the progress she has made the past few weeks. Thomas and I were both able to hold her this evening and feel of her absolute purity and her beautiful little spirit. She had her eyes open a lot more this evening than she has had. She just seemed more alert and more comfortable in general. She has done extremely well on her nasal cannula. In fact one of the nurses told us that she is doing much better on the nasal cannula than she did on the cpap. We are so excited about this huge step forward for Rachel.
How precious!!!
Rachel on her nasal cannula
Little Haley continues to plow forward as well. I was a little worried today about Haley because she has had a few more apneas than she has ever had. When she has these apneas her heart rate drops pretty low. I discussed with the neonatologist at Texas Children's this morning my concerns regarding this issue. My intuition says she has another infection. The Doctors decided to do some tests to rule things out. We should get some of the results in the morning. We hope and pray there isn't another infection going on.
Haley's cute bow
Haley with her pacifier
We are thankful to Rustic Falls out of Grantsville Utah for doing these beautiful custom engravings for our family. What generous and kind people to provide such beautiful work. Please except our sincere thanks for the time and energy put into these beautiful engravings. Here are pictures of what they sent to us.
How precious!!!
Rachel on her nasal cannula
Little Haley continues to plow forward as well. I was a little worried today about Haley because she has had a few more apneas than she has ever had. When she has these apneas her heart rate drops pretty low. I discussed with the neonatologist at Texas Children's this morning my concerns regarding this issue. My intuition says she has another infection. The Doctors decided to do some tests to rule things out. We should get some of the results in the morning. We hope and pray there isn't another infection going on.
Haley's cute bow
Haley with her pacifier
We are thankful to Rustic Falls out of Grantsville Utah for doing these beautiful custom engravings for our family. What generous and kind people to provide such beautiful work. Please except our sincere thanks for the time and energy put into these beautiful engravings. Here are pictures of what they sent to us.
Sunday, November 15, 2009
Progress and small set backs
The girls have had a good weekend. Haley was able to come off the ventilator yesterday, and be put back on cpap. Haley seems to be having a difficult time with the cpap. Not that she isn't tolerating it, but that she can't stand to have it in her nose. I can only imagine how annoying it must be to have air constantly blowing in my nose. She has had some set back with this surgery. She is back on TPN along with feeds and her cpap settings are higher than when she initially went on it. We hope she will get back to where she was, but she will be having another surgery in December to have her small intestines reconnected so she will probably be set back again. Hopefully she will be able to recover quicker next time since she will be older and bigger. We also hope sometime this week we can get her back with her sister at The Woman's Hospital of Texas. Haley will have her eye examined by the pediatric ophthalmologist surgeon on either Tuesday or Wednesday to see if any more surgeries are necessary. If all is well with her eye she should be cleared to be transferred back.
Haley not liking the cpap. Texas Children's Hospital uses a different cpap than Woman's and I think Haley is having a hard time adjusting to it.
Rachel has been doing really well the past week. She has steadily been weened down on her cpap settings in preparation for tomorrow. Yes tomorrow they are going to take her off the cpap and try her on a nasal cannula. We are so excited for this to happen. We hope and pray she will be able to tolerate the nasal cannula. I think she will definitely enjoy the nasal cannula much better than the cpap. Like Haley I think Rachel can't stand the cpap. It seems to annoy her as well, but it has served its purpose.
Finally got a close up shot of Rachel with her eyes open (at least one eye). She doesn't like the camera flash at all.
Haley not liking the cpap. Texas Children's Hospital uses a different cpap than Woman's and I think Haley is having a hard time adjusting to it.
Rachel has been doing really well the past week. She has steadily been weened down on her cpap settings in preparation for tomorrow. Yes tomorrow they are going to take her off the cpap and try her on a nasal cannula. We are so excited for this to happen. We hope and pray she will be able to tolerate the nasal cannula. I think she will definitely enjoy the nasal cannula much better than the cpap. Like Haley I think Rachel can't stand the cpap. It seems to annoy her as well, but it has served its purpose.
Finally got a close up shot of Rachel with her eyes open (at least one eye). She doesn't like the camera flash at all.
Friday, November 13, 2009
The Girls
Today was a pretty uneventful day for Rachel. Her cpap settings are slowly being weaned even more in preparation for the transition to nasal cannula. The doctor is going to try her on nasal cannula sometime next week. We are so excited for it! Haley has had an ok day. The doctor put her back on TPN since he decreased her feeding rate in half due to her having too much output (poo) from her ostomy. Haley is also still on the ventilator. She hopefully will be able to go back on her cpap tomorrow depending on her blood gases in the morning. The doctor watching over Haley this evening is Dr. Jen Arnold from TLC's the Little Couple. We were able to meet her and ask her questions. She is very nice. I use to watch her show when I was in the hospital on bed rest so it was neat to see her and meet her in person.
Thursday, November 12, 2009
Our two little fighters
The girls both had a good day today. We are splitting our time at Texas Children's Hospital and Woman's Hospital of Texas. Haley continues to recover from her eye surgery yesterday. She was more awake and active today. She even opened her eyes for us. Her left eye that had surgery wasn't swollen today. It looked good. You couldn't even tell she had eye surgery a day ago. She was started back on feeds today. She is still intubated and on the vent, but the settings have been lowered. Her oxygen needs have been as low as 21% (room air) so she should be able to be extubated tomorrow (Friday). We look forward to her being back on cpap.
Little Rachel is just that, she is having a difficult time gaining weight. She can't get above the 4lbs 12oz. The MD'S are working on a solution for that. Thomas and I both were able to hold her tonight. She seems to be more of a mommas girl than a daddy's girl. Thomas held her for a brief time because she wouldn't settle down, but as soon as I got her she calmed down and did just fine. We also were able to give her a sponge bath this evening. Rachel is such a wiggle worm. She wouldn't stay still at all during her bath. It took Thomas and I both to get her bathed. The funny thing is while we were bathing her, she decided to go poo. She didn't have a diaper on at this point so it got every where. We had to get her cleaned up from that. It was quite funny! I have a feeling that won't be the last time that happens to us.
Haley at Texas Children's Hospital
Haley the sleeping beauty
Rachel sucking on her pacifier. She had a hold of my fingers. She has a strong grip.
Rachel settling down after her bath
Little Rachel is just that, she is having a difficult time gaining weight. She can't get above the 4lbs 12oz. The MD'S are working on a solution for that. Thomas and I both were able to hold her tonight. She seems to be more of a mommas girl than a daddy's girl. Thomas held her for a brief time because she wouldn't settle down, but as soon as I got her she calmed down and did just fine. We also were able to give her a sponge bath this evening. Rachel is such a wiggle worm. She wouldn't stay still at all during her bath. It took Thomas and I both to get her bathed. The funny thing is while we were bathing her, she decided to go poo. She didn't have a diaper on at this point so it got every where. We had to get her cleaned up from that. It was quite funny! I have a feeling that won't be the last time that happens to us.
Haley at Texas Children's Hospital
Haley the sleeping beauty
Rachel sucking on her pacifier. She had a hold of my fingers. She has a strong grip.
Rachel settling down after her bath
Wednesday, November 11, 2009
Another Eye surgery
The past few days have been extremely long and eventful. Tuesday (11/10) the girls had their follow up eye exams. Rachel's eyes are looking better every week and are heading in the right direction, but Haley's left eye was not looking good. Dr. Coats was concerned that maybe her retina was detaching and recommended a retinal specialist from Texas Children's Hospital to look at it. After the specialist examined the eye, he thought it best to do another surgery, but more involved than just the laser. So Haley was transferred to Texas Children's Hospital for the surgery. The surgery was done this morning and it went well. Haley made it through the surgery just fine and the report from the doctor was better than expected. Her retina was only detaching a little and was on the corner of her eye which is a better location for that to happen than in the center of the eye. There was some scar tissue that formed after the laser surgery she had a couple of weeks ago that was pulling on her retina. The doctor originally thought the Retina was folded and had torn off a lot, but it wasn't as bad as they had expected. So we are hopeful that her eyes will heal and her vision will be spared. The doctor will check her eye in a week and the plan is for Haley to be transferred back to Woman's Hospital to be with her sister Rachel. Rachel is such a feisty little thing. Today her nurse told us that she pulled out her feeding tube and its hard to keep the prongs in her nose for the cpap. Rachel likes to move around a lot. The biggest goal we have right now for Rachel is to help her grow more. Rachel's last weight was 4 lbs 11oz. She hasn't quite hit 5 lbs yet. They have added more calories to her breast milk feeds so hopefully that will help increase her weight gain. Rachel and Haley are such little troopers. We are so proud of them.
Haley after her eye surgery. She was intubated again, but just for the surgery. They should extubate her soon and she will be on cpap again.
Rachel enjoying her pacifier. She grips that pacifier strong and can almost hold it in herself.
Haley after her eye surgery. She was intubated again, but just for the surgery. They should extubate her soon and she will be on cpap again.
Rachel enjoying her pacifier. She grips that pacifier strong and can almost hold it in herself.
Sunday, November 8, 2009
Yesterday and Today
Yesterday I was able to hold Haley skin to skin (Kangaroo) for the first time. It's so special to be able to have their little bodies against mine. I can't explain the emotions and the feelings that I get from holding my precious daughters skin to skin.
Mommy holding Haley skin to skin
The girls have had a great weekend. Both girls have been able to be weaned down on the cpap pressures from six to five and both have tolerated it well. Both Rachel and Haley have also been able to come down a little bit on their O2 requirements. Rachel got her immunizations today. Haley will get hers when her infection has cleared. Haley will have to be on Amphotericin for a full 28 days. She has already had it for 7 days now. Haley did have to be changed over to continuous feeds as she is now having too much poo coming out of her ostomy. She continues to get breast milk, but if her output doesn't decrease she will be switched to a special formula. I hope the output will decrease and she will still be able to get my breast milk. We continue to thank an all knowing and all loving Heavenly Father, it is only through him that our little girls and Thomas and I have been able to get through this experience in life.
Rachel Just Being Herself
Mommy holding Haley skin to skin
The girls have had a great weekend. Both girls have been able to be weaned down on the cpap pressures from six to five and both have tolerated it well. Both Rachel and Haley have also been able to come down a little bit on their O2 requirements. Rachel got her immunizations today. Haley will get hers when her infection has cleared. Haley will have to be on Amphotericin for a full 28 days. She has already had it for 7 days now. Haley did have to be changed over to continuous feeds as she is now having too much poo coming out of her ostomy. She continues to get breast milk, but if her output doesn't decrease she will be switched to a special formula. I hope the output will decrease and she will still be able to get my breast milk. We continue to thank an all knowing and all loving Heavenly Father, it is only through him that our little girls and Thomas and I have been able to get through this experience in life.
Rachel Just Being Herself
Saturday, November 7, 2009
Skin to Skin holding
Tonight we were able to hold our little ones skin to skin or also known as kangaroo holding. I held Rachel and Thomas held Haley. We used a Zak's Sack to help hold them secure. A zak sack is a wrap that zips up. Rachel tolerated it well and just slept the whole time. Haley wasn't sure what to think of it, but we will continue to hold her skin to skin to get her used to it. Its such a wonderful feeling to be able to hold my babies so close. This is another exciting step forward. The doctor even said that they are going to start weaning the girls cpap settings in preparation to transition to nasal cannula. It will be so exciting to get them on the nasal cannula. They continue to make wonderful progress. We hope they continue in this direction. We love our girls so very much and are so proud of them.
An update on Haley's eyes. Dr. Coats checked her eyes this morning to see how things were going. He said there was a little less haziness and it looks like her eyes are slowly improving. He will check her again on Tuesday (11/10).
Mommy holding Rachel skin to skin
Haley loves her pacifier.
An update on Haley's eyes. Dr. Coats checked her eyes this morning to see how things were going. He said there was a little less haziness and it looks like her eyes are slowly improving. He will check her again on Tuesday (11/10).
Mommy holding Rachel skin to skin
Haley loves her pacifier.
Wednesday, November 4, 2009
Three Months Old!
Today Haley and Rachel are three months old or 36 weeks gestation. Time sure has flown by. Even though it has been an emotional roller coaster ride the past three months it has gone by faster than I though it would. So many wonderful things have happened the past 3 months for Haley and Rachel. They have made good progress. 1. They are on full feeds and off the TPN. 2. They got off the ventilator and onto the cpap. They are still on cpap and doing well. 3. They have made it to 5 pounds. 4. They are able to maintain their own body temperature. 4. They get to wear cute clothes. We are so grateful for the big accomplishments as well as for the the little ones. Before we know it another month will go by and little Haley and Rachel will be home with us. We continue to look forward to the day we bring them home and get to raise them. The best is yet to come. We love our little girls so very much and have been so blessed.
Tuesday, November 3, 2009
Eye Exam Day
The girls both had their eyes examined today. Dr. Coats told us that Rachel's eyes are looking really good. One eye is almost out of the woods so to speak, and the other eye is pretty close behind it. Hopefully by next week they will be out of the woods. Dr. Coats also examined Haley's eyes today, He said he couldn't get a clear view of her eyes. He told us that they were still hazy from the surgery. He did say he could still see plus disease in her eyes. He will check again in a week to see what they are doing. He said it is common to have the hazy eyes after surgery. We hope and pray that her eyes clear up this week. Haley also has not had a positive culture since Sunday for the yeast infection, thank goodness for that. Our Stake President, President Banks assisted Thomas this evening in administering blessings to both girls. Thomas and I have a great love and appreciation for President Banks, He is a great man who knows the Lord and wants to serve him. He has been such a huge blessing to our family. A big thanks to President Banks for always being there for our family. I would say over all the girls had a great day today. Rachel and Haley both continue to grow and develop right before our eyes. We just love being able to hold them and talk to them each night. Our love for Rachel and Haley knows no bounds. We want and desire nothing more than to be able to help them reach their potential. It's all about them. With the help of a loving Heavenly Father we will be able to raise these beautiful girls.
Rachel
Haley
Rachel
Haley
Monday, November 2, 2009
Keeping Us On Our Toes!!
The girls are growing bigger by the day. Both girls seem to have had a pretty good day today. Rachel had a little episode as we were coming in to see her this evening. Her heart rate was high and she was upset. Come to find out she had a high temperature of 103.1. She was wearing warm fleece PJ's plus the isolette she is in is covered and it must have gotten too warm for her. She might be moved to an open crib very soon, if this continues. Rachel began to cool down once her clothes were removed and I held her. She eventually got back down to normal temp. She is doing good. Rachel is up to 4 lbs 13 oz and is 17 inches long. Haley had a pretty uneventful day which is a good thing. She seems to be ok since she has had the anti fungal medication. They took another culture today from her and so far it hasn't come back positive for yeast. We will continue to pray that the culture they did stays negative. Dr. Thompson did tell us last night that the cultures can stay positive for several days after the anti fungal med is given. We are praying that it doesn't come back positive because we don't want her to be on that anti-fungal medication (Amphotericin) for a long time as it can effect kidney function. We hope her kidneys do not get any more damaged with the use of this medication. Haley is weighing in at 5 lbs 4 oz. We didn't get her length this evening but we will tomorrow. So over all the girls had a pretty good day today. We continue to be amazed with their fighting spirits. They have a glow about them, that melts our hearts every time we are able to be with them. They are such beautiful little girls. Thomas and I feel the Spirit so strong when we are with them. They are so pure and innocent. I know that they have been sent to earth by a loving Heavenly Father to bless our lives. I am so grateful to my Heavenly Father for these two precious little girls. The impact they have already had on my life is describable. We feel like the luckiest parents in the world to be able to have and raise Rachel and Haley. We know because of the sacred covenants that Thomas and I have made in the Temple that they can be our daughters for eternity, if we live everyday worthy of those covenants. There is no greater knowledge to me than to know that because of Sacred Temple Covenants, and because of a Savior who gave his life for all, that we can be united as a family with all our precious sons and daughters in the world to come. Thomas and I have to now do our part to be worthy of such wonderful blessings. We love our little girls and are so so happy they are still with us here on earth.
Sunday, November 1, 2009
Infection!!
Today started early with a call from our nurse practitioner Kim, who is very kind and caring. She called around 5 AM letting us know that Haley has an infection from her PICC line. Haley still had the PICC line for the TPN that she is still getting. Haley's PICC line was infected with yeast, the very same thing that our precious little Ashlyn initially got infected with. The good thing about it is that because of two wonderful and observant nurses Brandi, and Kodi it seems it has been caught early enough to treat, unlike Ashlyn. We are so grateful to Brandi and Kodi for being the kind of nurses they are. They are extremely good with our girls, and they are very good at what they do. They are not 100% sure yet if it is yeast, they will have a microbiologist look at it in the morning. They seem pretty confident that it is though. We just returned home from the NICU and Haley seemed just fine. They have put her on an anti-fungal medication called amphotericin. It is a terrible drug for the kidneys, but they are monitoring her closely. We spoke with Dr. Thompson this evening about the yeast, and she seemed upbeat about it. She said the signs look promising for Haley. Haley did not have to be re-intubated, her O2 requirements have not gone up, she seems to be more active since they started the medication. Those are good indications that the yeast has not spread through out her body. They will do different tests tomorrow to see if that is true or not. We hope they have indeed caught it early enough. We also pray that the amphotericin medication does not destroy her renal function. She has already had her issues with her renal function, we don't need any more. Thomas was able to give her a Priesthood Blessing this evening for this issue. We feel confident that she will be ok, and that they will not have to give the anti fungal medication for very long. I was able to hold Haley tonight and she did just fine in my arms. I adore this precious little girl, she is such a sweet little girl.
Rachel seems to be on cruise control thus far. We hope that continues, we don't need her to get any yeast in her blood or any where else for that matter. Thomas was able to hold her this evening. She seemed to do just fine for him tonight. The last time Thomas held Rachel she was very agitated and that made Thomas a little nervous, he couldn't get her to calm down. Tonight was better for him, I could hear him singing I am a Child of God to her and He got a little emotional as he was singing to her, it was cute. I truly love and admire Rachel, she is such a beautiful little girl. We are proud of both our sweet girls, they continue to bring us such joy and happiness. We continue to trust in our Heavenly Father. We know that Heavenly Father is in control, he will always do what is best for all involved. He will not do anything that is not for our good. He loves us so very much, he will not allow us to suffer any more than is necessary for our growth and spiritual development. I know from first hand experience that He loves me, that he has been there for my family every step of the way. I know that I have a lot of growing to do, and I am grateful for the greatest tutorer (our Savior) who has and continues to guide us along.
Haley with her teddy bear
Rachel Sleeping on her side
Rachel seems to be on cruise control thus far. We hope that continues, we don't need her to get any yeast in her blood or any where else for that matter. Thomas was able to hold her this evening. She seemed to do just fine for him tonight. The last time Thomas held Rachel she was very agitated and that made Thomas a little nervous, he couldn't get her to calm down. Tonight was better for him, I could hear him singing I am a Child of God to her and He got a little emotional as he was singing to her, it was cute. I truly love and admire Rachel, she is such a beautiful little girl. We are proud of both our sweet girls, they continue to bring us such joy and happiness. We continue to trust in our Heavenly Father. We know that Heavenly Father is in control, he will always do what is best for all involved. He will not do anything that is not for our good. He loves us so very much, he will not allow us to suffer any more than is necessary for our growth and spiritual development. I know from first hand experience that He loves me, that he has been there for my family every step of the way. I know that I have a lot of growing to do, and I am grateful for the greatest tutorer (our Savior) who has and continues to guide us along.
Haley with her teddy bear
Rachel Sleeping on her side
Happy Halloween
Today was the girls first Halloween. No trick or treating and candy for them today,, but that is ok because their day will come for that. It won't be long until next Halloween rolls around, and they will be out with mommy and daddy enjoying all the good stuffs that comes along with it. We held both girls tonight, that was mommy and daddy's treat this Halloween. I held Rachel and Thomas held Haley. The girls for the most part seem to enjoy us holding them. We truly love these beautiful little girls. They just seem to have a way of lighting up the room with their purity and the closeness they are to our Savior. I know He is there with them, helping them through these challenging times. I can feel that as I am able to hold them. He does love them and He has blessed them so much. I am in awe with all that a kind loving Heaven Father has done for my little family. He continues to lift our spirits, in times of doubt and worry. We do not know the long term effects that come from being born so prematurely, we do not know how developmentally challenged our girls will be, but one thing I do know is that We will love and cherish every moment we have with our beautiful daughters. They are daughters of an all loving Heavenly Father and He has entrusted them to us, we will do all with in our power to raise them and to love them the way he has intended for us to. Thomas and I are so blessed to have Rachel and Haley in our lives, they are our everything.
Haley wearing her Halloween hat. It didn't fit on her well due to the cpap tubes.
Rachel wore her Halloween hat over her feet/legs. We couldn't get hers on due to the cpap tubes.
Daddy holding Haley
Mommy holding Rachel
Rachel at Her post
Haley at Her post
Haley wearing her Halloween hat. It didn't fit on her well due to the cpap tubes.
Rachel wore her Halloween hat over her feet/legs. We couldn't get hers on due to the cpap tubes.
Daddy holding Haley
Mommy holding Rachel
Rachel at Her post
Haley at Her post
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