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!!

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.

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.

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.

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.

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

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.