Tuesday, April 28, 2009

The Gang's All Here

After 129 days at Duke, Cameron is finally home with us! I honestly don't know if it has even sunk in yet. This is what we have been waiting for. We are so blessed and thankful for how God has provided for us.


Here are some pictures of Cameron's homecoming:

Cameron redid her carseat test before we left.

Cameron's monitor that must be hooked up at all times except baths.


The nurses cheered for her and blew bubbles as we left!

Aubrey meeting her sister for the first time. She was so excited to see two babies. At first she did a double take but then she had a lot of fun showing everyone that there were two sisters and where they were!

Reunited at last! Sisters together. Reagan on the left, Cameron on the right with the pacifier. So far today they seemed pretty oblivious of each other until tonight. They both started crying at the same time and boy did our house fill with noise! Then, we laid them down in the crib together and they stopped...for a bit.


Cameron seems to slowly be adjusting to being at home. Seth's mom pointed out today that Cameron is almost just like Reagan was when she came home. It is amazing what three weeks at home has done for Reagan - for the most part, she seems calmer and more like a full term baby than previously. Cameron left the NICU weighing about 5 lbs. 4 ounces.


We are so excited to be all at home together...even though that means lots of sleepless nights and chaos - we will do it together. We are so blessed to have the continued support of friends and family and their continual prayers. Our goal for the next few weeks is to establish a routine if possible and to finally all get settled in together - even though we have a ton of appointments in May coming up.


Prayer Requests for the future:


-the adjustment of all of our girls
-Cameron on her monitor - that the need for one would diminish quickly and that if it goes off for a real alarm that Seth and I would be able to address her needs promptly with no real emergency; also that we would not have a need for her cortisol shot and that she would outgrow the need for it soon.
-Upcoming appointments and retesting of Cameron's hearing

I probably will not be posting as often but promise to post pictures as time permits - we are going to be busier than ever but couldn't be happier!

Monday, April 27, 2009

So far so good

So far no bradys or apneas which means....tomorrow is still on. I am holding my breath, though, because we have been here before. I pray that Cameron is just as ready as we are to have her home and that she is going to keep it all together. I am going today to get trained on the monitors and to visit with my baby and then tomorrow morning bright and early we are going to learn baby massage and then bring her home! The baby massage is not for pampering - even though we won't tell the girls that...it is supposed to help them to stay organized and not get so overstimulated. They both are extremely sensitive to outside stimuli like light, sound, too much movement, etc. so this is supposed to help them chill out a bit.

Reagan had a tough day with feeding yesterday. Lots of spit ups out the nose and mouth. She choked on her medicine, lips started turning blue, and I got to use my cpr training and choking training from the hospital. Luckily I stayed calm and didn't freak out until after it was all over. Then I called Seth (sorry for those of you sitting near him who may have heard his phone in church yesterday) and started crying. Thank goodness the NICU trained us. Then, I went to visit Cameron with my parents and I was told, put her medicine in her milk...that is what we always do - I thought to myself - would have been nice to know that when she came home a month ago :). Oh well. We made it and are fine.

Aubrey has no clue what is coming tomorrow. I pray that she is just as excited about Cameron coming home as she was Reagan. She loves to help take care of Reagan and has been so loving. Every time she goes by her, she likes to kiss her on the head. She also loves to say that Reagan has stinky diapers - she thinks it is funny. Stay tuned and hopefully the next post will be pictures of Cameron's homecoming!

Friday, April 24, 2009

Emotions

The longer this process goes, the more emotional I seem to get. I am reacting to all of our ups and downs emotionally - whereas before, I at least felt like I was able to keep it together somewhat. For example, tonight I called to check on Cameron and one of the nurses in the TCN that has worked a lot with Cameron in the past had her. I started crying and told her, "I really needed for you to have her tonight. You have no idea." She said that they had already been snuggling tonight and that the other baby she has is with their parents in the care by parent room so she and Cameron would be hanging out a lot tonight. I know that this is just what Cameron needs but it is also just what I need. The assurance of knowing that someone is caring for her tonight that loves her means the world to me. I know that all of the nurses care but sometimes you have a nurse that has really connected with your baby and that is very special.

Cameron had her first full feed tonight. She is only on tylenol for her surgery recovery and got her IV out tonight. She has been pretty irritable, but who wouldn't if they couldn't eat and had a board taped to their arm? So, I am hoping that now that she can eat that she will be happier. The newest plan is for Seth and I to go to the hospital on Monday to get trained to use the monitor that Cameron is going to come home on. Then, on Tuesday, we should hopefully be able to bring her home. All of this will happen only if Cameron does not have any episodes of apnea and brady together. It is my understanding that as long as she doesn't need any oxygen, she could brady and still come home. I am so ready for Cameron to come home, even in spite of the bradys. I am ready for us to all be home together.

Reagan has transferred over to a new formula well. She was doing really well on her new formula mixed with milk except her reflux really seems to be acting up. It burns her when she burps and she will wake up screaming an hour after she has eaten. You can hear her belly making noises and churning. We are hoping that an increase in her dose of Prilosec will give her some relief and help her to feel better. When her reflux isn't bothering her, it is amazing how peacefully she is sleeping. Today has been a tough day for her, she has really been hurting - she gets her new dose of meds tonight.

Please also continue to pray for Aubrey and her adjustment to all of the changes going on at home. She has just gotten used to having one sister at home and we are about to add another.

Thursday, April 23, 2009

Good to Go

Well, it seems as if God is once again taking care of His children...specifically Cameron Hope Carter. We got to the Hospital around 8am this morning (Thurs.) thinking that we'd see her an hour before they take her to surgery (which was scheduled at 10am), and ended up waiting till 1pm until they rolled her back in the O.R. No problems or anything...they were just really busy. The actual surgery took less than an hour and went great. Two hernia's (sp?) removed. Two little incisions. The bandages will come off in a week. They're still saying that she should be coming home this weekend. Wshew! That'll be something. I can't wait to see them together again...both in my arms at the same time. We'll be sure to get some more pictures then. Thank you all for your prayers. It's obvious you are praying.

Four Months Old

The girls turned four months old today (but actually they are considered only 2 and a half weeks old adjusted age based on their due date - that is the age we hold them accountable to with benchmarks). Unfortunately, neither girl felt like celebrating today and each of them had a tough day in their own way. Please continue to pray for the girls. Cameron is now NPO - no food but IV fluids in preparation for her surgery - I pray that her poor little tummy isn't causing too much trouble. Please pray that things will go smoothly and that the surgeons would have skilled hands and that she would tolerate the anesthesia and intubation well. Please also pray for Reagan as we try to transition her to formula feeds...that her belly and reflux would cooperate. I wish I had weights and numbers to update you with, but I do not. I can say that yesterday at the doctor they weighed her with her clothes on (Reagan) and she was 5lb 15 oz. but that was fully clothes. Cameron lost weight yesterday, I have called tonight to check on her but her nurse was on break, so I will call back later. We will update as soon as we can tomorrow once we are back from the hospital. The surgery is scheduled to begin at 10 o'clock.

Tuesday, April 21, 2009

The Carter Hair Genes

So, all of the girls seem to have Seth's hair genes. Lots o cowlicks that make it very unruly. Here are just a few examples.


Cameron and Aubrey both love their do's thanks to their dad!!! Here are a few more photos...after some work on the hair.


Cameron has been eating like crazy today...maybe she will have some big weight gains because of it. They are checking to be sure that she does not have any infections in preparation for surgery on Thursday. Please continue to keep both girls in your prayers!

Message for Papa

Dad, Mom wanted me to leave you a message on here because she knew that you would be checking it. Once you get into a country that you have the ability to call - please call her. She was wondering if you wanted to go and see Cameron on your way back from the airport on Thursday. Hope you are having a safe and productive trip. Love you.

Monday, April 20, 2009

Hernia Surgery

Well, here is the newest - yes I know it changes like the wind. So, Cameron is scheduled for hernia surgery on Thursday at 10. Then, hopefully she may be discharged over the weekend. Please continue to pray for her. Today I was heartbroken as I sat and watched two other babies go home from the Special Care Nursery and knowing that we were to go home today as well. But I trust that this is the best for Cameron...even if her family misses her terribly. I pray that this extra time will allow for us to straighten out the feeding issues with Reagan so that we can smoothly transition home.
Just got a call from the Nurse Practitioner at Duke...Cameron won't be coming home today. She has had bradys for a couple of days in a row and she had three yesterday - one of which was a pretty big dip in heart rate. They think that they are due to reflux but just in case, she has to stay until at least Thursday. Please pray for her little body and how it is handling the reflux. We are pretty bummed for today but are thankful for the people at Duke and for their wisdom through this process.

Sunday, April 19, 2009

The Big Day

Today was one of those days where almost nothing went as planned - ever have one of those days? To start off with, I started feeling icky yesterday and have continued to feel so today. This kept me away from my hospital visit that I was planning today. Also, though, it has me worried about bringing Cameron home because she has her whole cortisol issue. I may not have ever mentioned it but basically, if she gets really sick - I mean major sick, her body does not have enough of this stress hormone to deal with it - so we have to give her an injection if she ever gets majorly sick. So, obviously I am praying that I feel tons better by tomorrow or else I will have to just let Seth handle both girls all by himself!!! Ha ha! I will be sure to take pictures if that happens! We also found out that Cameron's brady yesterday has earned her a chance to come home on a monitor. I believe that she will just have to use it when she is eating but we will find out for sure tomorrow. The doctors still have to check with the surgeon to see if they want to do her hernia surgery before she leaves but I doubt that they will work to clear their OR schedule just for that. So, we will probably be back later for that. Seth and I will be busy trying to get everything ready to go and get Cameron and we should get to hospital around lunch time. Now that we are going to be trained on monitor usage and hernia care...I am not sure how long we will be there but hopefully by dinner time we will all be home together. Please pray that I will feel tons better and don't have to worry about getting any of my family sick. Also, please pray that Cameron makes a safe and smooth transition home. Stay tuned for some awesome pics of the Carter family together at last!

Saturday, April 18, 2009

The Frenzy

I will not take long because, well, to be honest I just got back from WalMart and have been working all day and need to go and degerm myself from all of the days activities. Seth went camping with the youth last night (they had a blast by the way) and Seth's mom was cool enough to stay over last night and help take care of Reagan so I could get some sleep. My mom also came over and they helped with cleaning, laundering and stuff to get ready for Cameron to come home. Although, I know she will never remember that the house was clean when she came home, I fully intend on reminding her of this fact when she is older and I have to come over to her house and it is a wreck - I will say "when you were a baby, I worked hard all day to get the house clean just for you..." you know the rest.

As I look toward next week, I have a number of feelings...the most is relief and thankfulness. I am so incrediby amazed at God's grace and how much He has chosen to bestow on our little family. I am so much in awe of how His hand has been at work in our lives these past four months. I can honestly say that when Seth and I first heard the stats when we were 10 weeks pregnant - 15% chance they will make it, then 50% chance, and now look at us! Just take a glance back at the pictures from December and then look at them today - aren't they amazing! Isn't God good! I know that our lives are forever changed - and not just because we now have three girls. I pray that we forever live our lives in light of the work that God has done in our lives and that when others come in contact with us that they can benefit - that God would allow for us to be used to help others. As thankful as I am for the NICU doctors and nurses, I cannot wait until their faces are not the ones that we see on a daily basis. I am so ready for us to have all this stuff figured out - not the parenting thing because I know that will never be figured out - but the feeding stuff mostly and then we can settle into the routine that will be the life of the Carter family.

Today as my Mom and I worked on putting together some meals for the freezer for those crazy days ahead, I realized that Seth and I are still going to need your prayers more than ever! Our life is about to get way more complicated and we are going to be challenged in ways that we have never realized before. I pray that I can be the Mom that these girls all deserve.

So, here is the plan (although as always, it could change) - Cameron is coming home Monday. We are to go and get her around lunch time. The doctor is double checking with the surgeon, though, to make sure they don't want to do her hernia surgery before she leaves...but more than likely we will have to come back when she is closer to 3 kg (not sure in pounds) and stay overnight for her surgery. She is eating more and more and seems to love this new formula that she is on - unfortunately, Reagan does not seem to love it....or any other formula for that matter - she is being very picky!

We are so excited that at this time in two days, the girls could be laying side by side together at last!

Friday, April 17, 2009

Next Week

Well, it is all set...Cameron should be coming home next week as early as Monday. The only reason that would change is if they decide to go ahead with her hernia surgery before she goes home - but that rarely happens. She failed her hearing test again today and so she will have to go for outpatient tests after she comes home. Please continue to keep both girls in your prayers.

Thursday, April 16, 2009

everything changes

Went to the hospital today and found that Cameron was no longer in the TCN...she has been moved to the Special Care Nursery...which isthe last stop before you leave! She is now 4 lbs. 14 oz. They told us to plan on her coming home on Tuesday. Please keep her in your prayers...she has failed her hearing screen twice and they say it is common for it to happen but please pray that she will be cooperative (the doctor said the last time she was really agitated - probably because of the reflux.). Keep praying and hopefully we can pray her home!

Tuesday, April 14, 2009

Overachievers

Today at the hospital we got some great news about the girls -

1. Both girls are fully regressed in regards to retinopathy. They do not have to be seen weekly anymore and can be seen monthly now. Hallelujah!

2. Reagan has gained to 5 lbs. 6 oz. and has made better progress than a lot of babies that they typically see in clinic when it comes to continuing to gain.

3. Cameron has now been over 24 hours without a brady that needs oxygen and she is not spitting up like she was. She is sleeping more soundly and seems to like her new feeding plan.

4. Cameron may be able to come home sooner than we thought but she will more than likely have to come home on a monitor...or at least that is on the table for discussion right now. We will see how the week goes and then we may be having some exciting news for the end of the week.

5. Reagan's reflux is significant but it is not getting in the way of her gaining weight so aside from medication...the only other thing we are going to do right now is try her on Cameron's formula to see if that reduces some of the spit up for her. This decision makes things easier as far as both girls being on the same formula but stinky on the pocketbook because it is pretty expensive!

All in all, it seems that things are looking good...just learning what to expect from our girls since we have never had preemies before. Thanks for your prayers.

The Short Version

So here is the short version of sort of what has gone on in our lives the last few days:

Reagan - 5 lbs. 4.5 oz.
Cameron - 4 lbs. 11 oz.

Cameron - totally starting over with feeding stuff in hopes that we can stop the bradys and figure out the feeding stuff.
Reagan - evidentally her spitting up is a bigger deal than we thought, headed to Duke today to meet with clinic docs to see if we can do anything else to help her - we just thought it was reflux. Also, Reagan getting eyes checked today.

Please pray that Seth and I will be of sound mind to convey our concerns for both girls today and that the Lord would intervene for us to help us make sense. We have had zero sleep - the roughest night yet of parenting (including from when Aubrey was little). It is tough not being able to soothe your daughter who is obviously in pain!

Hopefully all will be resolved. We will fill you in later.

Sunday, April 12, 2009

At Least Another Seven Days

After a few good days, last night Cameron had a rough episode that bought her another 7 days in the NICU at least. She bradied when she was burping and couldn't come out of it on her own...they had to help her and give her some whiffs of oxygen. She has not had bradys like this since she was back in her early days in the NICU. Poor Cameron. I don't know what is going to happen next. They are not currently changing anything in her plan of care right now but are thinking that this brady thing is something that she may just have to outgrow. As long as she is requiring help, though, she cannot come home. Once she pulls herself out of them consistently, then she may be able to come home on a monitor (something I was praying that would not have to happen). Oh how I pray that we can miraculously find a solution to this problem.

Today was a wonderful day at our house but I still feel strange about living our lives here without Cameron. It did not feel like a complete family day today without her being here. I miss her terribly and long for the days when troubles like this are a distant memory (at least I pray that we will get to that point). Anyway, here is another picture of the big sister helping out.

Friday, April 10, 2009

Okay...So Mom Needs Photography Lessons

After many attempts...here are the best of our Easter photos...I guess that there is a reason that people pay professionals to do these!




As you can tell, Cameron was very pleased to be posing for pictures today! Poor thing, she will kill me one day when she finds out that I posted pictures like this for all to see but I have to be fair and share pictures of both girls don't I? I owe her some beautiful pictures once she gets home - being at home allows for you to catch them when they are in the right mood, you know? Plus those plastic bassinetts are so cumbersome and hard to maneuver around!
Here is the latest. Right now as I write this, everyone in the house is asleep except me. For Reagan to be soundly sleeping and not grunting is a first for us in about a week. She has not been sleeping very soundly - which is common for preemies I hear but very difficult when the mom ears kick in and you hear every sound they make.

Cameron has officially made it through 2 straight shifts with no bradys or big throw ups (sorry I know that is gross). The rice cereal really seems to be doing the trick. They are continuing with the specialty formula for the next week but she has been chowing down like crazy the last 24 hours. She has eaten every 3 hours with several snacks as well....which shows because she is almost 4 lbs. 8 ounces tonight! She has gained 2 ounces the last 2 days. That rice cereal is really packing on the pounds not to mention a few extra meals a day can do that to a girl you know? I am so thankful for some relief for Cameron and some positive news for today. I pray that it will continue.

Thursday, April 9, 2009

Can I Please Speak to My Sister?


Reagan, just like the rest of us, is very eager for her sister to be home. However, as each day goes by, that seems to be a day a little further off than we originally thought. Maybe I should just present the facts. Cameron is on this new specialty formula...still having bradys and still throwing up during or after her bottle. So, now they are trying to add rice cereal to it to help it stay down more. I do not know how she is doing since they have done that. I pray that this miraculously will help and that we will have our problems solved amazingly.

Reagan had a rough night last night but has slept beautifully today - why wouldn't she - she wore herself out last night. We had a wonderful photo shoot today for Easter pictures with our assistant Aubrey helping. The plan is to take Cameron's Easter pictures tomorrow and then we can share them. Here are the girls pictures from 2 days ago.


Tuesday, April 7, 2009

Food Issues

Another week - at least. I have put off writing this because...well, to be honest...it just bums me out more than I can say. I went to visit today to hear that Cameron has continued to get sick and had another brady today. The good news is that she is bringing herself out of them and not needing stimulation...the bad news is that they are now starting from scratch when it comes to her food. As of tonight they have now taken her off of all of mom's milk and formula and are giving her an elemental formula called Elacare. What that means is that it is made up of very simple elements - amino acids, simple sugars, etc. The doctor said that doing this helps to identify if Cameron has a milk protein allergy. She will have to be on this formual for at least a week. (Which means that Cameron will not be home in time for Easter) Then, they will be able to tell me if I have to start eliminating dairy from my diet to feed her or if we have to move on to specialty formula because she cannot handle it at all. I am still not sure what this means for Reagan as far as her food but it kind of seems like a waiting game. It could be that she too has this issue but it just wasn't diagnosed in the hospital. I did take a picture today of both girls and will post them tomorrow. Please pray for the girls and the whole food picture for them. I want for them to be able to eat and not hurt. I want for them to love to eat to help them grow. I can deal with spit up and messy clothes but I just pray that we can find a solution for their poor tummies to make them finally feel better. I am thankful that this was diagnosed in the hospital for Cameron and that we are not having to do all of this trial and error from home. We will let you know how things go.

Monday, April 6, 2009

Updated Photos


Here's the big sister photos finally. These were taken this weekend. Aubrey loves to help with Reagan as much as she can. She likes to play Mommy.







Sunday, April 5, 2009

More Delays

As I write this, I will not lie, I am so discouraged and frustrated right now. I cannot stand to see my girls in pain and this whole reflux deal is TERRIBLE!!! I wish I could take it from them but I cannot. Cameron continued to have bradys and desats yesterday so they have completely taken her off of all formula - just mom's milk and have brought down her volume to the bare minimum. They are also adding an additional reflux medication - reglan to her regimen. They say it should take about a day to work. I just called this morning (Sunday) to check on her and they say that she seems to be feeling some better just hungry. They are hoping to try her back on some formula tomorrow to see how she handles it. This should tell us if the problem is a reflux issue or a formula intolerance issue. So, now the earliest she will be home in Wednesday. Yesterday was one of the roughest days we have had in the NICU in a while - not so much because she cannot come home but because she is in so much pain and there doesn't seem to be anything I can do about it.

Now to Reagan, who lately has been showing some of the same symptoms as her sister...she has had trouble keeping her food down as well. We are scheduled to go and weigh in at the pediatrician tomorrow and I am praying that we can get an appointment with him to talk about all the new developments. Because they are identical, it is likely that Reagan would need this additional medication. But I really just want some relief for her. I called the doctor on Friday to let them know she was spitting up so terribly and asked if I should take out the formula additives for her and they asked me to wait until tomorrow for her to be weighed. I will be interested to see what her weight is tomorrow and what actions follow.

Please continue to keep our family in your prayers.

Friday, April 3, 2009

Delay

This morning when I called to check in on Cameron the nurse told me that Cameron has been spitting up quite a bit and today she had a brady and some pretty significant desats along with it. She was refluxing and her bed and had been laid flat instead of raised up. So, she cannot come home on Sunday because they want to watch her and if she has even a hint of trouble then she will have to probably stay another week. If she also has trouble then they will also take another look at her feeding plan and kind of start from scratch with her. So, it looks like we have a while yet.

Reagan has also been spitting up quite a bit and after she is weighed on Monday we will be taking a new look at Reagan's feeding plan as well. Poor girls...this reflux stuff seems pretty stinky. Aubrey continues to want to "help" Reagan as much as possible. Each time it happens, I think - Where's the Camera? and then I realize that I can't get it because my hands are full with a toddler and a newborn. So, eventually I am hoping to get it together for some family photos. I am going to try to go the hospital late tonight or early in the morning and should have some updates shots of Cameron for you, too. I cannot wait until she is home. I know it will be very busy and will take some getting used to but this hour and a half round trip is getting very old and I am feeling very torn between all three girls. Please pray that I am able to meet all of their needs as best as possible.

Wednesday, April 1, 2009

Things I Have Learned About Reagan Since Coming Home




Since coming home there are a few things I have learned about my daughter now that she lives with us and is with me 24/7.

1 - She loves her pacifier most of the time, except when she want to try to use her thumb...which she is slowly getting better and better at doing - see picture one.

2 - She loves relaxing with her Daddy. She loves just having him sit quietly and holding her.

3 - She has a red birthmark in between her big toe and her pointer toe and a regular birthmark on her foot and Cameron does not. So, if they ever try to pull a switcheroo on us we can say "Let us see your feet!"

4 - Before approaching check for the "stop hands" - you can see those in the second picture - those mean that she is either using the bathroom or that she is refluxing and her belly hurts. Beware, if it is that she went to the bathroom then watch out because she hates to have her diaper changed!

Just a few little tidbits from the Carter house and plenty more to come. Tomorrow - hopefully pics and little factoids about Cameron.

Not so Fast

Well, I knew it sounded too good to be true. Yesterday both girls had some feeding issues with adding some formula in their milk. They just plain did not want to tolerate it. While Reagan seems to gag and spit up some, Cameron seems to want to toss her cookies everywhere (sorry couldn't think of a nicer way to put it...I think they call it emisis? in the hospital). So, long story short, Cameron can't come home yet. They don't want to send her home until they figure out the feeding thing for her. Today they are trying a different supplement called Alomentum I think and it is supposed to be gentler on her stomach. I have called the pediatrician today to see what he would like for me to do with Reagan as well. Reagan has been having a little bit of formula added to her milk for some time now and seems to tolerate that but if I add any more then she doesn't seem to like it. Ah well, I would rather us clear up these mysteries before both of them are home. On other news, Cam is only short one ounce to be at the weight requirement for coming home. Reagan has no retinopathy in one eye and in the other it seems to be going away quickly. She took her eye exam like a champ today. Last night Seth and I were able to actually get some decent sleep - Hallelujah! So, maybe we are getting into the groove of things. Aubrey is continuing to love on Reagan more and more and when she cries she will say "Don't cry Cameron" (yes she still calls Reagan Cameron but that is okay) and then she will say "paci?" for pacifier because she knows that Reagan likes her pacifier. It is very cute. However, I can't wait to see how confused Aubrey is when there are two babies here since every baby's name is Cameron it should be interesting!