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.