Thankful

It is hard to believe that Thanksgiving is done and Christmas is just around the corner. The last 6 months have been an absolute roller coaster for us and we are thankful that the ride has slowed down during this busy time of year. Farrah is doing great! We think that she must be over 9 pounds now, which will be confirmed next week when she gets another vaccination and is weighed. Farrah had her first RSV shot two weeks ago and handled it like a champ. Farrah is growing and growing. She has pretty much outgrown all of her newborn clothes with footies and moved into 3 month clothes. Unfortunately, Farrah's umbilical hernia appears to be growing and not shrinking, so we have scheduled a consultation with a pediatric surgeon to see if they think that future surgery is necessary. It also appears that the hernia is causing Farrah discomfort, which we worry about. We have learned through research that surgery for this type of hernia is not typically done on such small babies, but we hope and pray for Farrah's sake that the hernia will go down on its own. Time will tell.

We have noticed significant positive changes in Farrah's interaction with us in the past two weeks. She maintains fabulous eye contact with whomever is holding her or talking to her. Farrah coos and "talks" with us while kicking her feet and moving her arms. Farrah is enjoying awake time in her swing and bouncy seat. Farrah's eyes can track us as we move around her. Farrah is eating more and sleeping more. We are still up at all hours of the night but it seems like Farrah is more comfortable than she was when we had her on a higher calorie fortifier.

We have developed a very nice relationship with Farrah's pediatrician and her family, and we were invited to their home for Thanksgiving. This relationship came after I met one of their daughter's, Lauren, through my bookclub and became friends with her. Lauren helped Ray to get his current job when he found himself unemployed the day that Farrah was born. She has been so helpful and kind to us, and her family has done the same. For Thanksgiving, their family prepared a delicious meal. Ray's sister has been in town for the long holiday weekend, so she also enjoyed the delicious meal and helped us keep an eye on the video monitor while Farrah slept upstairs and we all ate downstairs. It was a wonderful evening and we are so thankful to have found more friends here that we can spend time with.

We wish you all a wonderful start to your holiday season!

Thanksgiving Day

 

Holding Farrah the day when I got my flu shot

 

Farrah on her boppy pillow on 11/24/12.

 

 

4 Months Old

Life with Farrah at home, Ray working full-time, and me working almost full-time from home and now one day per week in the office is BUSY. I used to update the blog late at night but now I am starting to go to sleep since we are getting up at all sorts of different times in the night. No day (or night) is the same with Farrah, so we try to get enough sleep between the two of us to cover Farrah's feedings at night while still allowing us to function the next day.

Farrah has a good appetite and weighed in at 8 pounds, 3 ounces at her 4-month appointment today. She is snuggly fitting her newborn clothes and we have started using some of her 3-month clothes in the past few weeks. She is now 20 inches long. I have been to lots of follow up appointments with Farrah - ophthalmology, pulmonology, pediatrician, early intervention, newborn intensive care follow up program and we have some more appointments on the horizon - cardiology and pediatric surgery to look at Farrah's umbilical hernia. All of the doctors are very pleased with Farrah's progress. Farrah is starting to do tummy time a little more every day and we are still working on her breast feeding. She gets bigger andstronger every day and it is such a joy to watch her changes from week to week.

RSV season is just around the corner here in AZ, so we will continue to hunker down and keep Farrah isolated. Family members who will be spending time with Farrah this winter are getting the Tdap booster and their flu shots. Other than family, we have had very few visitors, and it will probably remain that way until the spring. Farrah cannot be around anyone who is sick because her immune system is still pretty fragile, especially with how much she went through respiratory-wise. Farrah qualified for insurance to cover a series of 5 RSV vaccines that must be administered every 28 days, and we will start with those later this week.

Hopefully I will be able to update a little more frequently in the future. I've added some of our newer photos below.

Photos from Farrah's 'newborn' photo shoot two weeks after coming home:

 

 

 

 

 

 

Photo from this past weekend 

 

 

Request from Meghan and Ray

Thanks to Ray's mother, Ash, Ray and I will have a print out of this blog and want Farrah to be able to look at it in the future. A lot of people have said that they have had problems trying to post comments on the blog. If you have been touched by Farrah's journey, included her in your prayers or prayer chains at church,  or just want to share a thought or quote, please send me an email at m_masterson310@yahoo.com (please note: there is an underscore _ in between the two m's). If you have already sent a message or card to that effect, don't worry about re-sending... we are saving everything we've received for Farrah.

We would love to know who has been following along with us and want to be able to share that with Farrah down the road. In the past four months, we have received so many encouraging emails and texts that have really helped to carry us through from one day to the next.

I will be sending out a birth/coming home announcement with a bunch of very belated thank you cards. If you would like to receive one, please email me your address.

Now that Farrah is home and doing so well, I plan on continuing to update this blog but it probably won't be as often as before. As you can imagine, Farrah keeps us very busy from sun up to sun down and everywhere in between. I like to say that Farrah is so happy to be home that she wakes us up all the time to tell us so.

As of yesterday, Farrah is up to 5 pounds, 5 ounces. She has outgrown almost all of her preemie clothes. As I was folding up her preemie clothes and reorganizing her newborn clothes in her dresser drawer, I couldn't believe that she has already gotten so much bigger since coming home only two weeks ago. Farrah takes a 2 ounce bottle every 2-3 hours. If she is up for drinking more, we give her whatever she'll drink. With all the bottle feeds, our bottle warmer is a life saver - a big thank you to Joe and Kim for that thoughtful gift!!! Farrah has also been breastfeeding once per day. Hopefully we can increase that as Farrah gets bigger and stronger. Farrah had some tummy problems her first week home, so we've been giving her plain breast milk as her tummy calms down. Hopefully as we add the fortifier and extra vitamins back, she will be able to tolerate it ok. It is pretty funny to be talking about a little one's bowel movements so much, but my mother tells me that it comes with the territory of being a parent.

We are loving on Farrah every chance we get. Farrah is very good about telling us when something is amiss and then we play a quick guessing game to figure out what she needs. Once we've changed her diaper and given her a bottle, cuddling seems to always do the trick. Early Intervention will be working with us in the near future to evaluate any areas where Farrah might be struggling. This is a benefit provided to preemie parents to help their children stay up to speed with developmental milestones and with addressing any challenges they may have down the road. We are looking forward to working with them to see what will help Farrah the most. We will do whatever we can to help give her the best start possible.

Now...some long overdue photos...

Lots of Mommy and Farrah cuddle time after she received her next set of vaccines on 10/10.

Farrah in a milk coma on Mommy's lap.

 

Farrah has been smiling a lot, but this is the first one that I caught on camera.

 

Farrah fast asleep on daddy's chest.

 

 

Update From Home

It is so wonderful to have Farrah home! As you can imagine, our sleep schedules have been drastically changed, but we are so thankful for the changes and recognize how far Farrah has already come. Farrah has been thriving at home with us. She acts more and more like a newborn each day and is growing like crazy. As of today, Farrah weighs 5 pounds! Some of the preemie outfits that were too big for Farrah only a few weeks ago don't even fit in her any more length-wise. Farrah has been seen by her pediatrician twice this week for weight checks and in order to keep a close eye on Farrah. I took Farrah to a follow up appointment with the eye doctor and he did not see any signs of  ROP (retinopathy of prematurity), which is great news. We don't need to check back with him for another 6 months. Farrah will be seeing a pulmonologist later this month to have a baseline check up regarding her lungs. She will need to be followed for a while as we keep an eye on Farrah's lungs and see if there will be any long term issues from when she was on the vent. Early Intervention will be doing an evalution of Farrah to see if she shows any early signs

Our time to update the blog is even more limited these days, but please know that we are all doing well, especially Farrah. I plan on updating at least once a week. now that Farrah is home. Thankfully, our cats did not have any issues adjusting to a baby being in the house. They want to be around Farrah and come looking for her when they hear her crying. We still put them in the laundry room at night and watch them all the time when they are around Farrah - just because you can't be too safe around animals.

I hope to get some more photos posted online soon. Thank you for all your communication about how happy you all are that Farrah is finally home!

Finally Home

Today, on the 85th day of her NICU stay, Farrah came home, and on her due date none the less. Ray and I were called this afternoon and told that today would be THE day. All the doctors and nurses are so proud of Farrah's progress, especially in the past month. Ray and I couldn't be prouder of our little girl. Farrah has been through so much in her 85 days of life and now is she acting like a newborn. We can't get enough of her little grunts, cries, and squeals. As we walked out of the hospital with Farrah in her carseat, we were both filled with so much appreciation for that very moment.

So many prayers answered, so many positive thoughts felt...we are blessed beyond belief...

So excited to bring Farrah home!

 

Last bottle feed in the hospital

 

Farrah in her coming home outfit.

 

Getting Closer to Home

Even though there have been no posts for a few days, everything is going very well. When we realized that Farrah could be home as soon as this week, I called in reinforcements to help get the house ready for Farrah's homecoming. My mother flew out here on Friday morning and stayed until today. Together we were able to get the nursery ready and get odds and ends that I had not been able to pick up. We put together baby items that still needed to be assembled. Who would have thought that a baby bouncer seat could be a challenge to put together? Ray built the stroller on Saturday night and ours\ cats were quick to scope out all the new items. Now we are way more ready than we were on Thursday. My mother and I also had a really nice visit and had a blast folding all the tiny little clothes and decorating Farrah's room. There are a few finishing touches for Farrah's room and then I will post some photos on here.

Farrah had a great weekend. She passed the car seat test on Saturday night. For those who aren't familiar with the test, a NICU baby needs to sit in a car seat for 90 minutes without any drops in heartrate or desaturations. Farrah passed the test! That means that Farrah is one step closer to coming home. Farrah has been able to continue bottle feeding without any trouble and is up to 60 mLs each feed. During her feeding times, Farrah starts off very alert and then gets sleepier and sleepier as the feeding goes on. All the milk she is consuming is adding up, as tonight Farrah weighed 4 pounds, 4.5 ounces.

We made a decision about Farrah's vaccinations and will only be giving her one set while she is in the hospital. Then we will follow up with Farrah's pediatrician for the rest. We pray that Farrah has no setbacks after receiving her shot. On Tuesday night, we will be "rooming in" with Farrah as part of the NICUs encouragement to parents to spend 12 hours taking care of their baby before bringing him/her home. Rooming in is supposed to give parents an even better idea of what to expect and oftentimes brings questions to the forefront that parents never knew they had. On Wednesday morning, we will be attending the discharge class. We keep writing down questions for the class since it seems like coming home with a preemie is a lot different than coming home with a full term baby. We need to go over infant CPR too. Everything is coming together and now we wait to see what day Farrah will be able to come home. If Farrah comes home by this Friday or Saturday, that will be right around her due date. It will

Some of you have asked about Ray's work situation. Thankfully, he has been able to sell cars while looking for other opportunities and he will be starting a new position with another company on October 1st. One of our local friend's opened up the door for him to interview with this company and now he will be working there. While I was out of the office earlier this summer during my hospital bed rest and then recovery from my c section, my time off came from disability and a corporate leave. Now that we have a dependent child with medical needs(prematurity with a low birth weight and chronic lung disease), I quality for FMLA, or federal leave. We are so happy that I will be able to take some time off when Farrah comes home. It is a HUGE answer to prayer.

Farrah is such a cutie! We are more in love with her every day.

No More Tubes

Yesterday, Farrah got a little fussy and pulled out her nasal cannula. There was an order in to leave it out if she pulled it to see how she did on room air. Well, I am pleased to report that Farrah has been on room air ever since. After that, she pulled out her feeding tube in between her feeds, and now she has been on bottle feeds only for over 24 hours. That means no tubes! Farrah is not always satisfied after having her bottle, so the doctors wrote an order today for ad lib feeding, which means that if Farrah shows signs of hunger, her nurse does not need to wait until it is time for the next feeding. A typicaly bottle that Farrah drinks has 35 mL of milk, but between her 11 am round and 1 pm today, Farrah consumed 75 mLs. She is one hungry little girl! The more Farrah is eating, the more she is sleeping. The more she sleeps, the more she grows. Farrah was also moved to an open crib today and done a great job of regulating her temperature.

We are proud to report that Farrah hit the four-pound mark tonight! She seems to have one foot out of the NICU door and the rest of us are trying to catch up with her.

 

 

Getting Stronger

For the first time, the hospital staff has recommended that we plan to take the discharge class soon and start getting everything in order for when Farrah comes home. We still haven't been given a discharge date or even week, but Farrah has shown lots of promising, steady growth in the past week and a half. Due to Farrah's low birth weight and potential future health issues, Farrah will be followed by a state organization that supports premature babies and their families once they leave the hospital. We are thankful for the various organizations that support the families of preemies. Farrah will also have a lot of doctors' appointments during her first year.

Farrah has been nippling the majority of her feeds and is getting bigger. Last night Farrah weighed 3 pounds, 14 ounces. Farrah's face is filling out too. One of Farrah's nurses told us that it is very possible that Farrah could come home weighing less than 5 pounds. It all depends on how Farrah does in the next few weeks in terms of adjusting to an open crib, continuing to gain weight, etc. Farrah still occasionally breathes fast, and her medical team is watching that. They don't seem too concerned about it. Today she was breathing especially fast, but she had a busy day with physical therapy, nippling, and her eye exam, so those events could have gotten her a little more worked up. Farrah's eye test today came back normal - yahoo! Farrah will have another eye exam in two weeks. They also took Farrah's oxygen down to 3/4 liter. They are weaning little by little and we appreciate how conservative her team is being, as everyone wants Farrah to cruise along until she goes home. Ray and I have some important decisions to make about Farrah's vaccinations. We know that being vaccinated in the NICU can cause set backs for preemies and have thought that waiting until her adjusted age would be better, but we have been urged by the NICU staff to vaccinate her while she is still in the hospital being so closely monitored. We have also been urged by the NICU staff to vaccinate Farrah sooner than later since she was so sick. We have some reservations about the NICU vaccination timeline and don't want to make any decisions regarding vaccinations too quickly.  Farrah also has an upcoming hearing test (no date scheduled yet) and we pray that she will pass that test with flying colors. Farrah seems to be more alert each day. Farrah is a social baby and her nurses say that she loves to be held by them as they walk around her "suite."

We continue to pray that Farrah will keep getting bigger and stronger; that Farrah's breathing will regulate; that her eyes will mature and she will keep have normal results from her eye exams; that her hearing test will be normal; and that Farrah won't have any other infections or major setbacks.

I held Farrah tonight for her feeding, and it was the first time I've seen her nippling. I am amazed by our little girl. She knows to pace herself but also has a sense of urgency when it comes to taking the entire bottle. Nippling makes Farrah tired and she has been resting very well lately, which is exactly what should be happening.

On the up and up

The past week has been full of many positive changes for Farrah. The latest of which is the fact that Farrah took an entire bottle this morning and had no issues. This change caught us both by surprise since we thought that bottle feeding or "nippling" was still a ways away. Farrah's nurse called us this morning to let us know that an order was written for Farrah to try nippling at her 11 am rounds. Both of us were not able to be there, so we asked her nurse to take a photo if she could. I received a text around 11:30 am from Farrah's nurse saying that she had no trouble with nipping. What amazing news! Farrah's nurses had a theory that some of her crying was due to her being hungry and they felt that beginning to bottle feed might make a big difference for her. We are so thankful that she had a good first experience.

Ray and I gave Farrah her first bath last night. Farrah's nurse Lisa walked us through all of the steps while she took photos and videotaped it for us. Lisa warned us that Farrah might cry the entire time, but that was not the case. Farrah looked a little unsure of what was going on but mainly looked at both of us and only cried a little bit. Farrah even slept for parts of it. To ease preemies into their first bath, it is recommended to keep them swaddled and only wash one area at a time. Farrah loved being wrapped up in a warm blanket at the end and being swaddled. We were told that Farrah slept well through the night after her bath.

 

 

Farrah was taken off the high flow cannula this morning and moved to a regular nasal cannula. The only change is that she is no longer receiving humidity. So far, so good with her handling the change. Ray and I take each change with cautious optimism, as we cannot forget how ill Farrah was less than one month ago. Farrah's feeding tube was removed, and a new one was put into her nose. It is smaller and more out of the way than the one in her mouth. This change was done to help prepare Farrah for bottle feeding and to try to keep her from tugging at it. We pray that Farrah will keep getting stronger and stronger each day. She has had slow weight gain, but last night she made it to 3 pounds, 11 ounces.

These wonderful changes mean that it is time that Ray and I start preparing for when Farrah comes home. We still do not have a tentative date, but she is getting closer and closer as she meets these major milestones. We have been so busy with the NICU world that we have not had much time to prepare ourselves for our baby coming home and all the changes that will bring to our lives. Please pray for us as we transition from NICU worry mode to preparing for a preemie to come home mode. I've realized that this preparation mode means less time at the hospital and more time balancing work, home, and all the preparations we need to make for Farrah's homecoming. Farrah is in great hands and now is the time for her mommy and daddy to start getting things in order at home.

All of your love and encouragement means so very much to us. Thank you for everything!

Cruising Along

Farrah is still off the vent and is only getting support from the high flow cannula, which she would prefer to pull out at any moment. She also tries to tug on her feeding tube, so the nurses either have to swaddle her or dress her in an outfit where the cuffs fold over into mittens. Farrah is more active every day and definitely loves working out her vocal cord. Her cry is loud enough that we can hear it when she is in the isolet. It is so nice to hear her cry and to watch all her little movements.

Farrah's high flow cannula settings are lower than they were over the weekend. They hope to wean her off completely. Farrah's care team is very cautious about any changes they make with her. Today they wanted to keep Farrah in her isolet for most of the day in hopes that she would start to gain more weight. To everyone's surprise, she actually lost a little weight. This tells me that holding her is what is best for her right now, which is how I felt all along.

Please pray that Farrah's lungs will get stronger and stronger, that she will begin gaining more weight, that she will keep regulating her temperature once they move her into an open crib, and that she will be protected from any other infections. Farrah has had a tough road and is such a trooper.

We are looking forward to a nice weekend with lots of sleep and plenty of time with Farrah.

I'll close tonight with with a quote from Peek-A-Boo ICU that does a wonderful job of summing up how we feel.


With every breath you take, you take my breath away.

With every beat of your heart, my heart skips a beat.

With your every hour you fight, you teach me winning takes patience.

With every tear you shed, I shed a thousand more.

With every gaze you give me, I see a clearer picture.

With every ounce you gain, I gain an ounce of hope.

With every step forward you take, I stand up taller with pride.

With every gentle grasp my finger, you show me the true meaning of strength.

With every bit of your courage, you teach me how to be brave.

You are my pint sized hero...super mighty and supremely loved.


Strong but MIGHTY - that's our Farrah!

Grow Farrah Grow

It has been a few days since the last update, and in this case, no news is good news. We had a wonderful weekend with Farrah and spent a lot of time holding her. I started a new schedule where I go to see Farrah before and after work, which is tiring but well worth it. Ray was able to come to the hospital early this morning with me and then stayed and held Farrah for hours after I left for work.

Everything has been going so well with little miss Farrah. She has done well on the high flow cannula and looks much more relaxed these days. She has already worn three of her new preemie outfits and looks so darn cute in them. Farrah's primary nurses were all so excited to see how much progress she made over the weekend. None of them could believe that she could get off the vent without the steroids, and they are being very protective of her when the doctors and nurse practioners do their rounds. Farrah's nurses don't want her to be pushed too quickly, so they are speaking up and asking the staff to take any changes for Farrah slowly. Farrah's nurses are encouraging only one change at a time, and they are really pushing upping her feeds before weaning her oxygen support. Farrah could probably go into an open crib now, but her nurses want to give her at least another week in her current bed so that she does not burn extra calories trying to keep her temperature regulated. We are in agreement with everything they are pushing for because we also recognize how far Farrah has come and don't want to see her backslide due to impatience or too much, too fast. Three cheers for the primary nurse team - Sherri, Karen, Lisa, Margaret and the recent addition of Jeanie!!! Having these wonderful women as primary nurses to Farrah makes us feel so much better about not being there all the time, and we know how much each of them cares about Farrah. Sherri came back to work on Monday and had purchased a Burt's Bees baby bath set for Farrah. All of her primaries are so thoughtful and take such great care of Farrah and of us.

Not too many other things have changed other than Farrah's feedings have been changed from continuous feeds (where she is fed all the time) to compressed feeds (where she is fed for shorter periods of time.) This will start to get her ready Farrah has handled the feeding change with flying colors. Her weight gain has been slow and steady and she is now at a solid 3 pounds, 10 ounces. They will not be making any changes to her feedings this week but will probably look to go up on the calories of the fortifier and the amount of breast milk in the next week or so. Farrah is getting closer to the time where they will start teaching her how to bottle feed. She has a strong latch on her pacifier right now, so her nurses are predicting that she will be a good bottle feeder and nurser. Hopefully that will be the case.

I had thought that Farrah started smiling on Friday, but no one else saw it to confirm if I was correct or crazy. Today I went in before work and asked Farrah's nurse, Karen, to be on the lookout for her smiling, and sure enough, Karen confirmed that Farrah is smiling occasionally. Now if I could only capture it with a camera...

In the meantime, here are more recent photos. Please note Farrah's cute outfits with the oh-so-handy cuffs that fold over into mittens so Farrah cannot yank on her feeding tube when no one is looking.

 

 

 

 

 

 

 

 

Even better news...

In case you are not on facebook, I'll give you the wonderful news...

Farrah is off the vent! Before I left work yesterday, Farrah's nurse told me that they were planning to change Farrah over to the nasal CPAP since she had been at 21% oxygen all day and was doing so well. When I arrived, I pull the quilt off Farrah's bed to see that she had this device around her head and asked the nurse how the CPAP worked. When the nurse looked in, she said that Farrah had taken the nasal CPAP and put it into her mouth since she had last looked at her, which meant that Farrah had been breathing on her own for an extended amount of time and was doing great. The nurse practioner heard about it and decided that Farrah was doing well enough to go on to the high flow nasal cannula. This is less oxygen support than Farrah has ever been on! They switched her over to high flow last night and she has been doing great ever since.

The best part is that we can hear Farrah's voice now that the breathing tube is out. Instead of faint squeaks like we heard over a month ago, we can hear hoarse cries. She is very vocal and it is so very precious. I cried when I realized that I could finally hear her crying. I texted Ray to give him all the updates and he came over right after work to see the changes for himself. We did her 8:00 pm rounds together and then Farrah's night nurse told Ray to sit down in the arm chair. Then she put Farrah underneath Ray's t-shirt for kangaroo care. Farrah and Ray slept while he held her for over one hour. Farrah's vitals were perfect and she was so happy to be held be her daddy again.

This morning we found out that Farrah had a great night and kept up all her breathing. Keep in mind, this change is without any steroids that we talked about earlier. She is doing this all on her own! What an amazing answer to prayer. There is a chance that Farrah could still get tired and need a little more support, but we are praising God for this incredible change in our daughter. She blew all the nurses away with how quickly she graduated from the vent, to the CPAP, to the high flow. She is on room air on the high flow...she really did fly off the vent like we were praying for.

The other big change is that Farrah's night nurse put a little t-shirt on her last night and carefully watched Farrah's temperature and turned off the heater settings on Farrah's bed. The next step is for Farrah to move to an open crib and maintaining her own body temperature is an important piece of that. Farrah did so well with her temperature over night that we received the go-ahead this morning to bring in some preemie clothes for Farrah. In order to be NICU-friendly, the clothes need to have snaps or buttons down the front. I ran around town today with our friend Mary looking for clothes for Farrah. Farrah's PICC line was removed this morning, so without a breathing tube or PICC line, so is free to move about as she is able. We are so proud of our baby girl and these big changes.

Now she just needs to keep gaining weight so she can move into what they refer to as a Feeder Grower in the NICU. We pray that her lungs stay strong and so appreciate everyone's prayers and thoughts for the exact same thing.

I am washing the preemie clothes I picked up for Farrah and then am headed over to the hospital for more time with her this evening.

Now for some photos...

Where's Farrah?   :)

 

This is how the CPAP should look, but it only last like this

on Farrah for less than 30 minutes. 

 

 

Trying to get Farrah to calm down after her diaper change

...only her pacifier and being swaddled did the trick.

 

 

Farrah looking up at Ray as he tries to calm her down.

 

 

Answered Prayer

Tonight we held little miss Farrah again for the first time in a month! She has been doing so well with the change to the conventional vent, so Farrah's night nurse Lisa said that it would be ok to hold her. Boy, did we jump on the chance to do that! Ray and my schedules matched up today, so we met at home, grabbed something to eat, and went over to the hospital. We stopped in at the gift shop and picked up a balloon with butterflies on it for Farrah's 2 month birthday. It was great to be able to spend time at the hospital together. Holding Farrah tonight was an incredible answer to prayer!!!

Please keep praying that Farrah will come off the ventilator soon. Her xray this morning looked ok, so they will just keep a close eye on her. As of tonight, her ventilator settings were very low. Her oxygen was 23%. 21% is room air, so she barely needs any support. The pressures being pushed out from the vent were very low as well. If Farrah keeps this up, she should be flying off the vent in no time. She is 37 weeks now, so week by week, we should start to see her reach more milestones and get closer and closer to coming home.

The other big thing to pray for is that she will start to steadily gain weight. For the past three nights, her weight has bounced up and down by only a small number of grams - holding around 3 pounds, 8 ounces. Tonight it was down again. The hope was that Farrah would start gaining more weight once they added the fortifier to her feeds. While she is tolerating the fortifier very well, she is not gaining weight as quickly as they hoped she would. It sounds like they would like to try one of the powder based fortifiers that we used in the beginning called HMF (that she did not originally tolerate). With HMF, they can give her a lot more breast milk than what she is getting now, and she was definitely gaining weight on breast milk alone. With the current fortifier, she is receiving 50% breast milk and 50% fortifier. Hopefully they can figure out the magic combination and Farrah can just grow, grow, grow.

By Fridays, we are so tired after existing on a small amount of sleep each week. Thank you to those of you who have been praying for and sending positive thoughts for Ray's job situation. He has had some interviews lately and we are praying that something permanent will work out very soon. We trust that the right opportunity is out there - it can just be hard waiting for it.

As we reflect on Farrah's past 63 days in the NICU, we remember that we are not in control. Farrah is a miracle and such a blessing to us. All of your support has lifted us up and encouraged us more than you will ever know. There is no greater gift than your prayers and positive thoughts for all three of us, especially Farrah. I've posted some photos from tonight below.

 

 

Farrah slept almost the entire time she was held.

She looked very comfortable and her vitals were stable the whole time.

 

 

Sign that I made for Farrah's 2 month birthday

 

 

 

 

Two Months

Farrah is two months old today! Yesterday (Wednesday) was a big day for Farrah, as they decided to switch her from the jet ventilator to the conventional vent. She was down to the lowest settings on the jet, so it was just a matter of time until they would make the change. Farrah's doctors want to be very conservative with any changes that they make with Farrah. I visited Farrah after work and they had just moved her over to the regular vent. Farrah was handling the change ok and was doing what she does best - sleeping. Her body was swaddled, but I watched as Farrah slowly worked her hands out of the swaddle. She is a sneaky one and the nurses still can't risk having Farrah pull her breathing tube out

We request your continued prayers and positive thoughts for Farrah to get off the vent ASAP. Once she can tolerate the regular vent, they will try to get her off the ventilator all together. Let's pray Farrah off the vent. I had mentioned steroids before. Right now, Farrah's doctors are giving her one final chance to show us all if she can make the move off the vent on her own. We are praying that it will be the case.

Ray and I plan to going to see Farrah tonight after we are both done with work so we can celebrate Farrah's two month birthday as a family.

Ray's Birthday

Today (Sept. 2nd) is Ray's birthday. He had to work today, so we did not do anything in the daytime in terms of celebrating. When Ray got off work, we went to our friends' house for a double birthday celebration for Ray and Dennis. There was a great spread of food, thanks to Mary, as well as great company. It is good for Ray and I to get out and interact with people because it is so easy to get caught up in our little world of survival mode. After the party, we headed to the hospital for a late night visit with Farrah. We did not stay too long since it was late and we were both pretty tired.

Farrah was sleeping the whole time that we were there, so we talked with her nurse and the other nurse for a bit. Farrah is still on the jet ventilator but is on low settings. Her weekday team will make a decision about moving her back to a regular vent. This may also be the week that they give her steroids to help her lungs. We would just love to see her get over this hurdle of not being able to breathe on her own. There is not much else to report. It has been a quiet weekend for Farrah, and we'll take that. Farrah is still tolerating her feeds and the fortifier, and she is getting lots of much needed rest.

PIE update

The jet appears to have helped improved the PIE issue that developed on Thursday night. As I was driving into work, one of the care provider's from Farrah's care team called me to give us an update and say how pleased he was with the difference in the x-ray between Thursday night and Friday morning. When I arrived at the hospital after work today, one of the doctor's showed me the x-ray comparisons, and there is certainly a difference for the better.

Farrah's antibiotics were stopped on Friday after a 21 day course. Today, they took new blood cultures to keep a close eye on Farrah's PICC line and try to stay on top of any possible new infection. Thankfully, the cultures are still negative at this point. Farrah's still tolerating her feeds with the fortifier and pooped again this evening while I was changing her already poopy diaper. This is a good sign since she was approaching more than 24 hours without a poop.

Farrah's doctor brought up the topic of steroids to us today. We had thought that this topic might come up soon. For babies in Farrah's situation, it can be very helpful for them to receive small doses of steroids to give their lungs an extra boost and hopefully get them off the vent for good. According to Farrah's NP, there is a narrow window when they like to give the steroids, and Farrah just hit that window. Farrah's care team views her recent PIE diagnosis as a sign that there is still a lot of inflammation in her lungs that will prohibit her from getting off the vent on her own. Even with great blood gases, her lungs are still struggling. The longer we wait, the more likely we are to run into other setbacks with her lungs. We decided that we will move forward with the steroids soon. Please pray fervently with us that the steroids will provide the extra push that Farrah needs to get off the vent. She has been SO close before, but after 36 weeks gestation, she is considered to have chronic lung disease and they hesitate to keep her on a vent if there is a way to help get her off the vent. They worry about scarring of her lungs and dependency on the vent. Please join us in praying that the steroids will help Farrah get off the vent once and for all.

When we feel discouraged, we try to remember to look back on how far our little gal has come in nearly two months. Farrah is a fighter with a very strong will, and we love her so much and are so proud of how far she has come in her first (almost) two months of life. Farrah's two month birthday is coming up this Thursday, September 6th.

In the two photos below from Friday night, you can see that Farrah still likes being swaddled. Between her pacifier and me stroking her hair, she drifted off to sleep after fighting it for more than 30 minutes.

 

 

One Step Back

We just spoke to Farrah's nurse and doctor and learned that Farrah has had a small setback this evening after 8 pm. She had been doing so well with her breathing and they were able to wean a lot on her oxygen support on the vent during the past few days. Tonight, they did an x-ray after she seemed to be struggling out of nowhere and determined that she has a condition known as PIE (pulmonary interstitial emphesema) of her left lung. They re-intubated Farrah with a new breathing tube and started thinking about what would help Farrah. The quickest way to resolve this issue of PIE is to put her back on a high frequency vent, but instead of the oscillator, they are going to use a ventilator referred to as a jet. Her care team is not that concerned about this change, but we are taken aback by it. You'd think after all the ups and downs we have been through that we would be prepared for other setbacks. It gives us such a feeling of helplessness. Farrah has been doing so well this week and was clearly feeling much better too. This change means that she needs to be sedated more often since the jet shakes her body just like the oscillator did. Our little Farrah is not out of the woods yet. From what I read online, PIE is more often seen with preemies soon after their birth and Farrah is dealing with this issue nearly two months after her birth. We pray that this does not add any other complications to Farrah's NICU journey.

Farrah is still getting stronger each day, but her lungs aren't as strong. When I visited her yesterday, I watched as she lifted her head completely off her bed and turned to face forward. I couldn't believe I was watching her move so much. She is a fiesty little one! Farrah's nurse yesterday was not too worried about her movements as long as she didn't turn her head far enough to tub on her breathing tube. We were really hoping that all this improvement with her lungs was a sign that she was well on her way to the ram cannula, but it looks like our hopes were a bit premature. It is hard to see this setback. We were getting so close to be able to hold her again, and now that day is a little further away.

Since Farrah has been tolerating the fortifier so far, they increased her feeds to 9 ccs per hour. They probably won't make any other changes to her feedings until sometime next week. I almost forgot to mention that the lumbar puncture cultures came back negative, so they decided to stop the antibiotics. Farrah has been receiveing the antibiotics for 21 days now and there are no signs of an active infection. We pray that she won't get any more infections during the rest of her time in the NICU.

While we wish that this weekend would be restful with lots of Farrah time, unfortunately it looks like we will both be working a lot. This is a big car sales weekend for Ray, and I have comes to terms with the fact that it is expected of me to do whatever it takes to meet my work's deadlines.

A Great Day

As Farrah's nurse today put it - "Farrah had a great day!" First, some great news - Farrah's head ultrasound came back normal! We were so happy to hear this news, especially after the high levels of oxygen that Farrah was on in the past two weeks.

They were able to wean on the settings for the regular vent. In fact, they are already low enough that she may be able to come off the vent completely and go on to the ram cannula (nasal). That is a huge thing to pray for right now. Farrah's nurse noticed that Farrah's skin was looking a little dry and ended up giving her a sponge bath today. Farrah was not a big fan of her bath, but afterwards just lied in her bed looking all around. She has not needed any sedatives in the past two days and looks as if she is sleeping very comfortably.

They started Farrah on a fortifier this afternoon. It will give her an extra 22 calories per feed. Hopefully her body will accept the addition of the fortifier so she can get all the extra nutrients and calories that she needs. She is holding at 3 pounds, 13 ounces but it is now time for her to get over the four-pound mark.

I mentioned before that Ray is working long hours at a car dealership. He is working a commission-only sales position as he continues his job search. We are thankful for the opportunity he has to sell cars, as it provides extra income for our family. My transition back to work has not been as smooth as I had hoped, but we cannot afford to lose our health benefits right now. Please pray for both of our jobs - that Ray will find a full time job with great benefits and that I will be able to keep my current position as the demands increase from what they were before Farrah was born.

Ray and I have been overwhelmed by all of the support that we have received. For those who have mailed us something, thank you so much! If you have not received a thank you card, one should be coming in the near future. I have been taking photos of Farrah, but they are keeping her hospital room dark and the photos are not very good. Believe me when I say that she is looking very cute!  When she can free her hands from the swaddle they keep her in, she reaches straight for her ears. Her pacifier still soothes her and gets to drifting off to sleep in no time. So many cute things about Farrah to share...

Like a Champ

Farrah's day nurse, Margaret, (also one of her primaries) told me that Farrah handled today's lumbar puncture (LP) like a champ. The nurse practitioner who did the LP is very experienced and was able to access Farrah's spinal fluid on her first attempt. They gave Farrah some sedation meds beforehand, and Margaret said that Farrah stayed very calm throughout the entire procedure. We won't have all the results from the LP for a few days.

Farrah also had a head ultrasound today and we are waiting to see what those results show. Farrah is still doing well on the regular vent and her oxygen settings were as low as 28% over the course of the day. Room air is 21%, so she is getting closer and closer. We just keep praying that her lungs will get stronger and stronger each day. She has not needed as much sedation medication on the regular vent, and we are thankful for that. We believe that they will try to add a fortifier in the next day or two to the breast milk Farrah is getting. We pray that Farrah's tummy will accept the fortifier and that she will be able to start packing on the pounds and growing more cells, which is what she would be doing in utero during these finals weeks before her due date.

We are attemping to go to sleep earlier tonight. Ray needed to point out to me that I was reaching a point of exhaustion after only one week of going back to work. It is not possible to keep going the way I am for the entire time that Farrah will remain in the NICU. Something has got to give. At this point, my managers are not offering any flexibility, but we are hoping that they will allow me to work from home a few days a week. As much as I want to be super woman, I have to slow down and take care of myself so that I do not get sick. Our schedules coincided tonight, so Ray and I were able to go out for a sit-down dinner together for the first time in a long time.

There are a lot of unknowns about what will happen when Farrah gets out of the hospital. We pray for peace that everything will work out as it should, as both our jobs are a bit up in the air and I am counting on the fact that my company will give me some type of leave.

One Step at a Time

As of Monday night, Farrah is back on the regular vent. Her weekend nurses were able to wean her oxygen to the point where she was on the lowest settings, and Monday's doctors decided to make the change. They moved Farrah to the vent at 12 noon, and so far she has tolerated the change wonderfully. They also did another echo (heart ultrasound) and determined that Farrah's heart looks great. There was a possibility of her having endocarditis because of the MRSA, but it is all clear. Plus, there is no evidence of the PDA coming back. What a relief that news is! At midnight, they changed Farrah from the giraffe bed back to a regular isolet. All good changes! As long as she can keep up with the regular vent, Ray and I should be able to hold Farrah again in the near future.

Tomorrow is another big day for Farrah. She will be having the lumbar puncture that I referred to a week or two ago. The infectious disease specialist who is overseeing her case recommended the lumbar puncture so they can be absolutely sure that there is no questionable signs of infection in Farrah's spinal fluid. We pray that it all goes smoothly and that the morphine will help Farrah tolerate the procedure well. She will also be having another head ultrasound to see if anything has changed after being so sick. The nurse practioner described everything as thoroughly looking at Farrah - head to toe.

The next step is to get Farrah on a fortifier. I learned today that Farrah is only in the third percentile in terms of growth, so I can now see why the doctors are pushing to add fortifier to her full feed feedings. We are hoping that we can try a new fortifier that is liquid, not powder, and that Farrah's tummy can handle it. If she cannot handle it, they will stop all feedings and go back to IV nutrition to give her tummy some time to recover. As of Monday, she weighs 3 pounds, 13 ounces.

In the words of one of Farrah's nurses's "Farrah still has a long way to go." Our energy is waning. Ray is gone for 10-12 hour stretches at his job and I am working my tail off at my job. We are both so tired at the end of the day and are lucky if we can get groceries purchased and laundry done in a week.

The baby shower this weekend was so much fun! It meant a lot to me that my grandmother, mother, and mother-in-law all made the trip to AZ to be there for the shower. Our local friends have been so supportive of us, and it was so nice to have many of them at the shower. Afterwards, my mother in law and I started to organize Farrah's bedroom. She now has lots of cute clothes and lots of blankets, toys, and bath supplies.

Full feeds

Farrah is now on full feeds! We thought that she was getting her ccs of breast milk every four hours, but we misunderstood. She is actually getting 8 ccs of breast milk every hour, which makes her on full feeds! They are planning to stop the iv nutrition if she continues to handle her feeds ok. Then they will be able to remove her PICC line. We've heard that you know your baby is getting closer to going home as the numbers of their wires and tubes go down. Farrah still has a ways to go, but a step like this is a great one.

Some of you have commented that Farrah looks like she is getting bigger. She sure is! Ray and I can't believe how much she has grown. She fills out more of her incubator and we need to look back at old photos to remember just how small she was at birth.

There is some talk of Farrah getting to go back on a regular vent soon, but it is all up to Farrah. Her oxygen saturation rate still goes up and down during the day, but today she was able to stay at under 60% oxygen. The further away from 100%, the better. It seems like she needs more oxygen support at night after she has been weighed and turned. Last night and tonight, Farrah was wide awake during her 8 pm rounds. She still needs to be sedated sometimes to help her rest while the oscillator does its job.

Last night, Farrah was able to meet her great-grandmother on my side and see her grandma (my mom) again. They were able to see Farrah look around and kick her feet. We took a four generations of women photo, but it is on my mom's camera and has not been uploaded yet. Farrah's other grandma (Ray's mom) will be in town this weekend too. She hasn't seen Farrah since the week after she was born. Then her uncle Connor will meet her for the first time and her grandpa (my dad) will get to see her for the first time since the week of her birth. Everyone is so excited to see our little Farrah! She is hard to resist - even the nurses say so.

Wednesday night (8/22) - Arms swaddled so she would not pull her breathing tube out.

Farrah hated having her arms so restricted.

 

Tonight (8/23) after her 8 pm rounds, Farrah needed a little coaxing to go

back to sleep. Her pacifier seemed to do the trick as she drifted off to sleep staring at

the top of her incubator.

 

 

 

Our Little Fighter

Farrah's little lungs took quite a hit from the MRSA and pnuemonia, so we had some good days followed by some not as good days in terms of her breathing and oxygen support. Rather than give a play-by-play all of the news we receive each day (both good and not so good), just trust me when I say that I am getting more gray hairs through all of this. Farrah's lungs have been working so hard, and over the weekend she started to need a little more oxygen support than she had needed. One of the things they do to make the oscillator work as good as possible is to sedate Farrah. She is receiving fairly regular doses of different sedation meds so that she does not breathe over the vent. It is hard seeing her non-responsive at times, but her vitals remain good and it is helping her lungs to get stronger to keep her from expelling any extra energy. Bless her heart - she sometimes tries to open to her eyes when we are there even when sedated. Other times, she does not need to be sedated and is alert and active and her oxygen levels are fine. The best explanations for all the ups and downs with her lungs is Farrah's prematurity combined with the nasty infection she had.

Some good news is that she has been going up on her feeds and is now receiving 6 ccs of breast milk. She is definitely getting bigger and it is not all fluid. She is now 15 inches long and her head circumference has grown quite a bit (just as they like to see).

Tomorrow Farrah has another eye exam. They plan to sedate her before it so she does not get as worked up this time. Hopefully it will go very smoothly. They will continue to do follow up eye exams every two weeks.

Farrah is still fighting away and we love her so much and are so proud of her. I tell her every day how many people out there love her and are praying for her. We know that she has guardian angels watching over her and angels here on earth taking care of her.

Our families are coming out this week and weekend for a baby shower. We are looking forward to seeing all of them and celebrating the most important person in this equation - Farrah. In addition to taking things one day at a time, we are all letting go and letting God.

Thank you all so, so much for your continued prayers and good thoughts, emails, phone calls, texts, cards, and gifts for Farrah. It is so encouraging for us to know that many people are walking right along side us as Farrah continues to fight.

Saturday update

I'm going to give a warning that the blog posts may not be as regular or lengthly once I go back to work this week.

Farrah did not need any sedation meds today and mainly slept through the day, according to her day nurse. When I arrived at 7 pm, Farrah opened her eyes and looked right at me. After that, she stayed awake until her rounds were over. She seemed to be fighting going back to sleep, so I held her pacifier in her mouth for a minute and then she started to doze off. That pacifier definitely comforts her. Farrah also had hiccups again at the end of her diaper change. She looks less puffy each day, which means that all the extra fluid is getting out of her. When I left her tonight, her night nurse had her lying on her tummy, which is one of her favorite positions. Hopefully they will have an eventful night. I usually call the NICU before going to sleep to see if there are any updates. The NICU also gets a call from me right when we wake up.

Slow and Steady Plus a New Photo

The diueretics are working, as Farrah went down another ounce tonight. Her weight today is 3 pounds, 7 ounces. This still includes extra fluid, so we are not sure what her dry weight is. We are wondering if she will be over the 3 pound mark once all the fluid is gone. She certainly looks bigger to us. Eventually, we will go back to hoping for weight gain, but only once it is solid weight gain and not all the extra fluid.

Farrah's feeds are now up to 3 ccs every 4 hours. She is tolerating her feeds well and we are so happy with each additional cc she is getting. She is still on the oscillator, but her recent blood gas labs have looked good. Her chest x-ray from last night also looked good. We are not sure how long they will keep her on the oscillator, but it is nice to see her looking more comfortable. During Farrah's rounds at 8:00 pm tonight, she was active and kept her eyes open for quite some time. While chatting with Farrah's night nurse this evening I learned that she had been employee of the month in the past. These NICU nurses are incredible I tell you.

I took the photo below tonight after watching Farrah close her eyes to go to sleep once her rounds were done. I started talking to her to say goodnight and then she looked up at me. We made eye contact and she held her gaze for a few seconds, and I was able to capture that wonderful moment on camera.

Back to Work

Farrah has had a quiet day. They were able to wean a little on her oscillator vent settings, and she appears less puffy. As of this morning, the culture the drew last night does not show any signs of growth. At midnight this morning, Farrah had a weight gain of over 100 grams, but they think that is due to the transfusion. The doctors don't want to see much weight gain for Farrah right now since she still has so much extra fluid on her. Farrah opened her eyes during her rounds today. Her day nurse, Karen, said that she would be happy to be another one of Farrah's primary nurses. Karen also lives in the same area of Phoenix where we live, and the two of us enjoy chatting. One of the things that helps me be comfortable with not being with Farrah all the time is the fact that she has wonderful primary nurses overseeing her care.

My case wasn't strong enough to continue my disability leave another 2 weeks, so I am headed back to work on Monday. Unfortunately, having a preemie in the NICU does not qualify a working mother for any type of leave by itself. I can't say that I am quite ready for it and have fears about how well I will be able to perform back at work. It will be hard not to call the NICU and check in on Farrah after each of her rounds. This weekend will be a time for me to get my head around it and prepare - buy some work clothes that actually fit, plan how to transport pump and keep bottles cool, come up with a schedule that allows me to get everything done that needs to get done, etc. However, I knew that I had to go back at some point and the day is here. The HR Director told me that they all understand how difficult this circumstance must be for us, and they want to be as accomodating as possible. She even said that my director would like me to be able to take unpaid leave once Farrah comes home. What a relief! We weren't sure if I would be granted any time off due to not working continuously for 12 months. There are other mothers in my company who have requested a pumping room, so they are designating one of the empty offices as the pumping room for our building.

We would appreciate prayers for strength as I prepare for the next part of our new normal. Ray and I will be seeing each other a lot less. Ray started a job at a car dealership and has been working long hours every day. It is also going to be hard to be away from Farrah for so long every day. Most likely, I will visit Farrah before or after work in the beginning, and once Farrah is able to be held again (not holding her is so hard) and can start to be bottle fed, we will work more visits into our schedules. Hopefully my work will allow me to work from home at least sometimes (like I did before). It would certainly make things a bit easier. We just keep reminding ourselves that all of this is our new normal FOR NOW. Someday soon, we will get to bring Farrah home.

Back on the Oscillator

Ray and I received a call at 4:00 am from one of the doctors who said that they were moving Farrah back to the oscillator vent. The doctor quickly added that Farrah is stable and just needs the extra support right now and they do not want to keep going up on her oxygen on the regular vent. The change was for Farrah's safety. Even though the oscillator jiggles Farrah, when I saw her today, she seemed much more relaxed than she had looked the past two days on the regular vent. Upon my arrival in the NICU this morning, one of the neonatologist's, "Rusty", checked in with me and let me know that he would be overseeing Farrah's care today. He then showed me the last several x-rays of Farrah's lungs that led them to make the change to her oxygen support. They started seeing more of what they call a "white out", which led them to believe that Farrah's lungs aren't quite ready for the regular vent due to after effects of the infection in her lungs. He also told me that it will take some time for Farrah to get to where she needs to go, but he reminded me that she will get there. Ray and I just need to continue to be patient as Farrah gets the treatment that she needs, and she will meet all the NICU milestones that she needs to meet on her own timing. It was very easy to speak with Rusty about all that is going on with Farrah, and I feel confident that we can turn to Rusty in the future if we have any questions or concerns about Farrah's care. For those who have asked, there is currently no expected date when Farrah should be able to go home; we will have to wait and see.

Since Farrah is back on the oscillator, the lumbar puncture is on hold for now. In the mean time, they drew a bit more blood for another blood culture to ensure that there still is no growth in Farrah's blood. She currently has a PICC line in, and they also put in an ART line this morning. These are in addition to Farrah's regular IV. They did not need to give Farrah any anti-anxiety meds since they moved her to the oscillator. I'm taking this as a sign that she is relieved to not have to work as hard, and now she is able to sleep away without any signs of agitation.

Farrah received another transfusion this afternoon. She is up to 4 units of blood now. We are so very thankful for all of the blood donors who roll up their sleeves time and time again and give blood. We are particularly thankful for United Blood Services blood that Farrah is receiving. If today's transfusion is not her last, that is ok by us. They are drawing a lot of Farrah's blood to test for everything and her body is not replenishing the supply quickly enough. Farrah needs the blood, and the blood is there, thanks to blood donors. If you are eligible, please think about donating blood soon.

Farrah lost 100 grams, which is probably all fluid. We are happy to see that the diuretics are continuing to help get all the extra fluid off Farrah's body. I have posted some photos below that have already been on facebook.

Moving Along

Farrah got a new PICC line in the early hours of Tuesday morning. They were able to get the PICC line in without any trouble, so we are thankful for that. Ray and I headed over to the hospital around 11 am today and Ray had a chance to change Farrah's diaper, take her temperature, and wipe her eyes and mouth. She did not open her eyes while he was there, but the lights in her new room are pretty bright because she is the closest bed to the hall with the big, bright lights. Later today, I asked Farrah's nurse if there was a way to block some of the light coming in from the hallway, such as putting a screen or blanket in the doorway. The nurse asked her manager if that would be ok, and we got approval to put up a blanket to block the light coming in. Farrah's bed is a lot darker now, which is what she prefers. I even saw her open her eyes a little once this change was made.

In terms of feeds, Farrah has been able to tolerate her feeds thus far. Farrah is still quite puffy from the edema, and they have switched her diueretic to more of a maintenance med. Tonight Farrah's weight went down by more than 100 grams, which is great when the goal is to get the extra fluid off ASAP.

Ray and I went over to the Women's Health department to pick up some of my medical records to pass along to the disability company. I have been getting a little push back with extending my short term disability and the current approved dates only cover until this Thursday. My physician signed off on 6 weeks of recovery after my c section, and I would really like to take an additional 2 weeks since a typically c section recovery takes around 8 weeks without any other complications. Hopefully the disability company will review my medical records and realize that pre-existing hypertension, kidney disease, superimposed pre-eclampsia, and 3 weeks of hospital bed rest is enough to extend my leave just a little longer as my body continues to heal. It is inevitable that I will be going back to work soon, and I am so thankful for the time I have now to be at the hospital all day with Farrah as she gets over this hurdle.

During Farrah's afternoon rounds, a physical therapist stopped by. We were told early on that physical therapists and occupational therapists work with the babies starting with their first week or two in the NICU, but up until now, we had not met any of the therapists. The therapists move the babies into the positions that will support calming and limit stress signs. Today's therapist walked me through what they are currently working on with Farrah. They want her to keep her hands by her face whenever possible, and they make sure that the babies have boundaries in their beds just like they would still have inside their moms. Farrah exhibits many of the habits that they want the babies to develop from an early age, but she still shows the stress signs that alert us that she is not happy about something. The therapist also gave me a packet of materials for future reference about milestones for babies when they leave the NICU and how to look at the milestones in terms of a preemie's adjusted age.

Farrah's primary night nurse, Sherri, wanted me to understand just how hard Farrah's lungs were hit with the combination of pnuemonia and MRSA. She explains this simply by saying "She has a long way to go, Mom." The NICU nurses often refer to all of us as Mom and Dad and not our first names. I was saying to her that as soon as Farrah gets all the excess fluid off she should be able to start breathing a lot easier. She did not want to mislead me by agreeing with my thought process and just reiterated that getting sick has really knocked Farrah down and it will take a while for her to get back up to where she was before getting sick. MRSA is a big complication and it has added another element of the unknown into the mix. We cannot sit and wonder what is going to happen. We just need to stay positive and focus on Farrah who is doing better and getting stronger each day.