Home

Piper is home.  We are home in Seattle.  Finally.  All of the pieces that have been scattered throughout our hearts and minds have slowly, piece by piece come together.  Two weeks ago I still stared at my unfinished puzzle, gaping holes left me breathless and teary eyed.  One baby still was not home and her arrival home was postponing our move to Seattle.  We were living in a hotel.  Nate was leaving in a few days to start his new job.  We had no idea when Piper Hope would be discharged.  Bent puzzle pieces littered the floor and were scattered all over the table.  I felt as if I was staring hopelessly as I wondered how the final pieces would come together to create the beautiful picture Nate and I had dreamed of and the picture the puzzle was supposed to portray.

Nate and I, again, walked into the NICU on Father’s Day toting Lincoln along in his car seat.  Another day in the NICU.  We felt a different heaviness as we entered the room that day because the following day Nate had to leave for Seattle indefinitely.  We went through the motions of caring for our children, loving on them and cuddling with them but the weight of what was about the happen loomed like a cloud about to burst with rain above our heads.  It threatened to crack open and send liquid flooding down to drown us at any second.  How much more could we take?  There seemed to be no end in sight.

However, the doctor had different plans.  To make a very long story short, since Piper was going to be going home on an apnea monitor, he did not see any reason to not send her home.  Honestly, we could not get out of the NICU fast enough.  The first time Piper was discharged, teary hugs and touching goodbyes followed us out of the NICU and it was hard.  We were leaving our friends.  Our family.  This time, none of the nurses who cared for Piper consistently were there so we just packed up quietly and left.  No pictures.  No tears.  Just the 4 of us.  Tagging along, however, was fear and nervousness that hid behind our tight lipped smiles.  A feeling of dread about what was to come that we did not have the first time we left with Piper enveloped us.  We were afraid.  Would she have another incident at home?  Would she recover?  Would we know what to do?  How could I take care of two babies with Nate gone?  How were we going to get to Seattle?  I do not even think we were able to enjoy Piper coming home because her being home opened up another round of stressors and complicated scenarios.

A week after Piper came home we were finally in Seattle.  Our new home together as a family.  Finally.  I cannot believe it.  We made it.  Piper is doing so well.  Lincoln is his usual go with the flow little dude.  Thankfully, we did not have to make this transition alone and my mom was able to help us with the move and with the babies.  I still feel like I need to pinch myself.  I look at the completed puzzle and I cannot believe we made it.  We did it.  Now I can put this puzzle aside and admire the beauty from the distance while still remembering the pain of the process of putting it together and begin a new one with a picture of our new family in our new home.  Home.  Home.  Home.  We are all finally home.

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June 15 – Day 116

Thursday marked 16 weeks since Lincoln and Piper were born.

16 weeks.

114 days.

Easter, my birthday and Mother’s Day and my due date have all passed. Winter merged into Spring and now we are quickly approaching Summer and Piper is still in the NICU. All along the doctors have told us to aim for my due date, give or take a few weeks. A few to me is one or two. Tomorrow will be 3 weeks past my due date and my daughter still isn’t home. She looks like a healthy 8lb 8oz full term baby but she still is not ready to leave the NICU.

We have taken her off of breast milk and put her on a thick formula. We have taken her off that formula and put her back on breast milk thickened with rice cereal and fortified with formula to add extra calories. She now sleeps on a wedge and is held on an incline by a sling.

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She now sleeps in a bed large enough to hold a 350lb child but she’s still not able to come home.

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Doctors all seem to have the same response when we speak with them regarding Piper. They shake their heads, turn their eyes to the ground and say that they do not know what else to do. They have tried everything so we wait for her to tell us when she is ready.

Our patience is wearing thin. Our nerves are beyond frayed. We want our family together and at home, for good.

To complicate matters, we found out in October (the same week we found out that we were having twins) that Nate was being promoted to become the VP of Sales in Seattle, Washington. His job was supposed to start in March but because the babies were born, the move was postponed until June. We thought by this point the twins would be home and we could all move to Seattle together but unfortunately that is not the case and Nate will be moving to Seattle without us. We have already moved out of our home and we are living in a hotel. Nate will leave for Seattle on Monday to start his new job on Tuesday and he will most likely stay up there until Piper comes home. We are so thankful for the blessings o our children and Nate’s new job but the timing is not ideal by any means.

I keep telling myself that it won’t be this way forever and in the grand scheme of things 4 months is really not that long but living in it feels like forever. I can’t wait to cross over the threshold of our new home in Seattle together. As a family finally home.

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June 11 – Day 112

After revealing how many days Piper went without a Brady in my last post, the Little Miss decided to have, not one, but TWO Bradys which had extended her stay at the NICU just a bit longer. Usually when babies are preterm the neonatologists wait 7 days post Brady before the send the babies home but since Piper is well past full term, they will only wait for her to not have an episode for 4 or 5 days before discharging her. Only 4 or 5 days doesn’t seem bad, you say? That is what we said too but it is pretty difficult according to Piper Hope.

Because of how often she has been having Bradys the doctors have decided to send her home on a heart monitor to alert us if she has an apnea while eating or sleeping. Thankfully all of her episodes are self recovered and do not need any intervention or stimulation from us but we still want and need to be aware if they happen at home. Piper will also be coming home with a piece of equipment called a wedge to help her with her reflux. She still has not been officially diagnosed with reflux but I say if the wedge helps her, let’s continue to use it!!

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Because of the incline on the wedge she has to be strapped into a sling to keep her from falling off. This contraption seems uncomfortable but she seems to be tolerating it quite well. Also, since the wedge is so large, she has been upgraded to a pediatric crib which holds up to 350 pounds. I have been tempted once or twice to get in the bed and cuddle with her.

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All we can do is continue to hope and pray for continued growth and maturity on our little girl so she can come home and stay home!! Until then, we continue to spend time with her every day cuddling with her an leaning more about our little miracle girl.

Lincoln has done so well in the three weeks he has been home. We have adjusted really well to him and feel like we have been able to bond and really learn about our little man. He is a great eater, is super social, such a great cuddler and, over all, he is just a really good baby. He has definitely stolen out hearts.

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Now if we could just get Piper home, that would be great.

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June 7 – Day 108

The doubled edged sword of the NICU where Piper is is the fact that every week, a new neonatologist is scheduled. When they were in Sutter Memorial Lincoln and Piper a new neonatologist would see them every day which gave us little continuity and consistency as things seemed to be we changing. In Roseville, the same doctor is on for a week and a new one comes the following week. This can leave you feeling like you are not getting answers and you are running into a brick wall over and over if the neonatologist who is scheduled is very “by the book” and unwilling or able to look at other options, or think outside of the box. I understand that each doctor has his/her own experience, comfort level and personality but it can be extremely frustrating. On the other hand, if you have a doctor who is more open to customizing a plan for your specific child and come up with a unique game plan, it is a welcomed thing to have the same doctor on for several days in a row. Thankfully, this week, our doctor was willing to try something new since obviously what was being done in previous weeks was not working.

There seems to be a debate about what Piper’s issue is. Is it reflux? Is it regurgitation that makes her close of her airway? Is she still learning to suck, swallow and breathe and be coordinated? Is all of this a preemie thing that she just needs to grow out of? Each doctor and nurse had their own opinion and take on what is going on with Piper. Last week we made a plan with a doctor who was pretty convinced that Piper’s issue was prematurity and simply needed to outgrow that and she needed more time. Not that Nate and I disagreed completely but we did not think prematurity was solely responsible for what Piper was facing. However, we agreed with the plan that the doctor came up with. Have continuity with nurses and only schedule nurses who have had her multiple times and know her sensitivities, keep her on monitors at all times, allow her to eat what she wants, use a preemie nipple when feeding her etc.

Towards the end of last week we felt like we had not gotten anywhere and Piper was still having consistent Bradys and we were beyond frustrated. We felt like we needed to do something different but we did not know what. Thankfully a new doctor came on Monday and even though she was a bit baffled at why Piper was still struggling she was willing to think outside of the box a bit and try something new. Even though Piper does not fit the “reflux” mold she said it would not hurt to try a few things that can sometimes work for babies with reflux. We put her on a thickened formula that usually does not come back up as easily. We also raised the head of her bed and she lays on her stomach for an hour after she eats to help keep the formula down. All of these minor tweaks seem to help. I feel like if I put all of this into words, I am going to jinx her and she’s going to start having Bradys again. But so far it has been 2 1/2 days since her last one and her nurse today commented that she seems like a different baby since she had her earlier in the week. Here’s to hoping that her no Brady streak continues and she can come home again soon and this time for good.

June 1 – Day 101

Thank you to everyone who has called, texted, followed up and checked on our Piper. The support has meant such a great deal to us and our family feels so loved and cherished. Having a child/children in the hospital is such a scary and unknown road having people there to hold you hand as you walk makes it more manageable.

When Piper was first re-admitted to the hospital she started having bradys almost every time she ate, again. We thought that she had grown out of that issue but having her back in the hospital and on heart monitors showed us that she was not mature enough yet. Thankfully her volumes of milk that she was taking was increasing and she was gaining a slow and steady amount of weight each day but the heart rate drops were concerning, for obvious reasons. All of the doctors and nurses assure us that even though Piper looks and is full term, she is still considered a preemie and has more developing to do.

Each time Piper has a Brady, she buys herself 7 more days in the NICU so we can all be assured that she has grown out of this scary and potentially life threatening issue. The first few days were so frustrating as Piper was having these episodes with almost every bottle. We felt like we were slamming our head into a wall over and over again as it seemed like we were not making any progress but thankfully it has been 36 hours since her last Brady. We hope that she will not have any more but only time will tell. So now, we continue to sit and wait and try to stay patient as we know that being in the NICU under the careful watch of the professionals is exactly where she needs to be. And one day, hopefully one day soon, she will be home for good.

May 27 – Day 96

I thought I was done documenting how many days our babies were in the NICU. I thought 95 was it. 95 is a big number, over 13 weeks, more than 2,000 hours but it could have been worse. It could have been more than 100 days. I always hoped that Lincoln and Piper would be out of the hospital before we hit day 100. And I thought we had made it. Both babies were home. One on day 88 and one on day 95. However that’s not where we stand right now. We are on day 96 and Piper is back in the NICU. Piper had always had a sensitive stomach since day one and that has included bouts of spitting up during or after a feeding. Normally the spit ups are minor but sometimes they would cause bradys to occur. Because of her tendency to spit up we always hold her upright for 30 minutes or so after she eats. Tonight, after Nate fed her, he was holding her up right and about an hour after she ate she started spitting up large quantities of milk and sputtering. The milk started flowing out of her nose and by the time I grabbed a bulb syringe she was completely choking, had turned blue and was not breathing. I tried to suction her mouth several times but it just did not seem like it was working so I dialed 911 and continued to suction her. Once they picked up the phone she started taking shallow breaths but she became more limp and took on more of a gray tone. A police officer and several paramedics showed up and monitored her. They said that she looked great but suggested that we take her to the ER because of her history and the fact that she had only been out of the NICU for a little over 24 hours. We took their advice and took her straight to the ER and within a half of an hour we were back in the NICU.

Tonight was utterly terrifying. Never have I been more aware of the fact that I am responsible for the health and well being of Lincoln and Piper. What an incredible undertaking that is by no means taken lightly. But seeing my child choke and turn blue in my home made parenthood take on a whole new meaning for me. Remembering my tiny girl’s face turn blue and see her big blue eyes staring, scared and panicked into mine makes me shudder. I can’t get that image out of my head. I wish I could replace that with the joyous memories that we created today but I can’t. I think I am still in shock. I am afraid to sleep tonight out of fear that Piper’s petrified little face will haunt my dreams. I want sweet memories of her coos, and smiles and innocent high pitched sighs to outweigh the terror or tonight but they don’t.

Leaving Piper in the NICU was beyond difficult. It feels like a cruel joke to allow us to take her home, start bonding with her in our family home, create memories with her here, watch her and Lincoln begin to discover each other for less than 36 hours only to have that taken away and we are forced to leave our daughter in the hospital where we just left. I try not to be the kind of person who wishes life away and wants to be onto the next phase of life but tonight, I would be happy to blow on a dandelion weed and watch the seeds sail rhythmically away with the wind as I wished out loud that my babies would be home with me for good. Yes, I would wish away the next few days or weeks to have them here and now.

With that said, I know that Piper is in great hands and maybe she’s not ready to be home and I will take away all of my wishes and have none of my dreams come true to make sure that she is safe and completely ready to come home and stay home this time.

May 26 – Day 95

Today was my due date with Lincoln and Piper.  A day that I looked forward to since the day we found out that we were pregnant with them.  Even though my doctors would have not let me remain pregnant through 40 weeks, it still was a day that was stuck in my mind as a goal.  The light at the end of a long, dark scary tunnel that would finally result in having the babies that we worked so hard for.  As the days ticked by while I was on hospital bed rest, May 26 became fuzzy, hard to focus on, a number impossibly to make out clearly because when I did, I realized that I most likely would not make it that far.  Each day became my goal therefore I could not fix my eyes on such a lofty number over 100 days in front of me.

Today, my due date, Piper came home.  Even though I thought that it was utterly impossible for me to make it to May 26, I did and our family became complete today just like it was supposed to when I was pregnant.  Today should have marked the end of my pregnancy, 40 weeks of gestating our twins and I should have given birth to two healthy babies but instead it closed another chapter of our lives and a new one began.  Our family came home together, not in the way that we had originally envisioned or planned but it still happened today.  We will never be the same after our time in the NICU but that door slid closed and locked when we took Piper out of the hospital today.  For so long we lived this life inside of the hospital and I learned to be comfortable with it, to love our nurses and to find a peace and a rhythm with my daily life.  When we left with our children today everything felt final.  They were ours.  We did not have one foot in the NICU door and one foot in parenthood anymore.  We could walk away knowing that we had reached the finish line and we were starting another race.  An obstacle course that may be more treacherous and complicated than the one we just left.  It will be filled with hills to climb, mud pits to navigate blindly through, scraped knees and broken bones but we can do it.  Nate and I will do it together.   

Piper completely turned around this week and almost seemed like she was a different baby.  If it wasn’t for our doctor (who was one of 5 doctors that we could have had this week) and one specific nurse who had Lincoln and Piper quite frequently being proactive and removing her NG tube on Monday, we realistically could have been in the NICU for another several weeks.  We so appreciated their aggressive yet thoughtful approach with Piper and it is exactly what we all needed.  

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It took Piper a few days to adjust to not getting any feeding through a tube and she lost a bit of weight but on Thursday afternoon I looked at Piper and honestly did not recognize her.  She was awake and alert, hungry and wanted to eat.  She was smiling and interacting with nurses and she took a full bottle for me.  I was stunned.  Nate came into the NICU about half way through the feed and he noticed that something had changed immediately.  That lightbulb that the nurses talked about finally came on.  She continued to eat well and fairly consistently.  She is still not taking the total volume and calories that she should right now but she is getting close.  We will continue to keep a close eye on the volume that she consumes as well as her weight gain but we will be able to do that now at home and with the pediatrician rather than in the hospital.  Being at home and feeding our daughter takes so much stress off of the situation.  We continue to be encouraged by her progress.  Today alone she took two of the biggest bottles she has ever taken at home.  We knew that we could handle her feeding difficulties or we would have never brought her home but we were still weary about how she would do.  One of her feedings at home was the most she had ever taken and then woke up 3 hours later, hungry, so we fed her another bottle and she drank the entire bottle.  Her progress today alone is confirmation that the timing for her and for us was perfect.  

Leaving the NICU today was so bitter sweet and full of so many complicated emotions.  Excitement, nervousness, a feeling of finality, sadness over saying goodbye to our nurses who became friends, and almost family to us, being in awe of how far our babies have come, etc. etc. I could truly go on and on.  I just stood over Piper’s crib and cried.  I was so overwhelmed.  I was thrilled to be taking my daughter home but so sad to say goodbye to people who had made this happen for us.  But having the nurses who admitted our kids and the ones who saw them on a weekly basis there to say goodbye made it feel complete and like it was okay for us to leave.  The doctors, nurses and staff have left an eternal mark on us and we have daily reminders through our children what they did for us.  

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Welcome home, my children.

May 23 – Day 92

We are adjusting well to Lincoln being at home but honestly, sometimes it does not even feel like he is really at home because we are still spending so much time at the hospital with Piper.  He has been such an easy baby and I do not know if that is because he was put on a schedule in the hospital that he has maintained or if he is just that mellow and go with the flow.  I guess only time will tell!  

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A lot has happened with Piper over the past few days.  This past weekend Nate and I really felt like Miss Piper had completely hit a wall when it came to taking and finishing her bottles.  After looking back over the previous weeks it was confirmed that she really had not progressed but was doing worse.  We had a heart to heart with one of our favorite nurses on Monday and told her our concerns and we formulated a game plan.  

Piper is almost a full term baby but was not taking bottles the way that she should.  Part of the problem is that the volume of milk or formula that she needs to take is based upon her weight, so each time she gains weight, she is required to ingest more food.  She basically could not keep up and it seems as if she just gave up.  Also, because her NG tube was still in, she was not required to take full feeds because whatever she did not complete was given to her through her feeding tube.  After evaluating Piper and her progress the doctor decided to be proactive and pull Piper’s NG tube out and see how much food she took through her bottle.  

There are two hormones that we have regarding feeding.  One tells us that we are hungry and to eat and another to tell us when we are full and to stop eating.  Since Piper was being fed through her tube, those hormones were being ignored and she was being overfed at times.  We think she was full all the time and basically slept  24/7.  This particular doctor wanted to push the envelope and go against the calculations and follow Piper’s lead for a while.  He obviously would not allow her to become dehydrated or starve but it would take a few days for her body to reset and to listen to the hormonal cues so we had to allow her to take what she wanted and not force her.

The first few days were pretty rough where she would not even come close to eating her full feeds and lost several ounces.  The doctor pulled out her growth chart and showed us that she was in the 55th percentile for a full term baby.  He said that normal preemies are below 10% for weight and you just do not see babies born at 26 weeks that high on the charts.  Some doctors would say that they did their job well and that this baby is fat and healthy, others would agree that she was over fed.  If you compare her to Lincoln she was over a full pound heavier which could indicate that she was being overfed.  

Yesterday was extremely difficult for us regarding Piper’s progress.  She still seemed somewhat stagnant  in terms of how much she was taking from a bottle and she just seemed completely uninterested.  Because of this, we needed a plan B for her.  What if pulling her NG tube out did not make a difference?  The doctor told us that if Piper did not progress in this area, she would need to have a G tube (gastronomy tube) surgically inserted into her stomach to assist her with her feeding at home.  

Also, most preemies need hearing tests before they are discharged.  Lincoln passed his the first time but Piper has had the test performed multiple times and her left ear continues to fail.  The nurses all assured me that she may be able to hear but the results could be impacted by other noises or frequency in the room so it did not necessarily mean that she could not hear. Yet seeing our baby girl fail over and over was so frustrating for us.  

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Emotionally Nate and I were completely drained after all of the bad news that we heard yesterday.  We have come so far but it truly felt like we hit a wall.  We were so close to bringing Piper home but still so far.  Today, we saw a change in Piper.  She seemed hungry.  She was acting like she wanted to eat and she was eager to be nourished and fulfilled.  We have never seen this in our daughter before.  She slowly ate more with each feed today and by the end of the day, she was almost eating what was being required by her.  She was awake and alert and did not seem stressed.  We saw major progress with our little one.  In addition, they retested her hearing and her left ear finally passed.  Today was full of news that we so desperately needed.  Even though a G tube may still be an option for us, we have a few days before we need to make that decision.  The doctor really wants her to be gaining weight every day, even if it is a small amount, and taking between 50 – 65ml per feed in order for her to go home.  After today we see that just might be possible.  Nate is hopeful but I am not holding my breath.  We are tired of disappointments and just want Piper to be home.  We are bracing ourselves because the next few days are crucial for Miss Piper.  We would appreciate every ones prayers for our daughter and that she flourishes and does not need surgery.

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May 19 – Day 88

After 88 days in the NICU Lincoln James finally was able to come home!  We were in Roseville with Piper when we got the call from the Neonatologist that Lincoln was being discharged and we could come pick him up.  Excitement, nervousness and disbelief enveloped me.  We were finally able to bring our son home.  We quickly left the hospital and drove down to Sutter Memorial for the LAST TIME, got our son ready and took him home.

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I feel like I am still pinching myself because I am in disbelief that he is actually home, for good.  This has been such a long road but so incredibly worth it.  I look at Lincoln and the pain of infertility, the pain of a miscarriage and the memories of the long hard road of my pregnancy and the NICU stay all seem to momentarily go away and I am able to say to myself that it was all totally and completely worth it.

May 18 – Day 87

This past week has been fairly busy with all of the changes happening with LIncoln.  It all started with the “lightbulb going on” (as the nurses call it) with his feedings.  Literally, it felt like overnight. he all of the sudden started doing really well with his bottle feeding so his NG tube was removed on Monday and he has taken all of his feeding from a bottle ever since!  If it was not for his hernia surgery he would have been able to finally come home either Tuesday or Wednesday but since his surgeon was extremely busy she could not schedule it until Friday.  We had to patiently, or not so patiently, wait to transfer him to Sutter Memorial on Thursday and then he had his surgery first thing the next day.  Before he left Roseville we took one last family picture of both of our babies being patients in the NICU.

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Lincoln did incredibly well during and after his surgery.  He received a spinal and was put to sleep and within 20 minutes post – op he was already kicking and cooing and wide awake.

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All I can say is I wish I looked that good and bounced back that quickly after surgery!!  Babies are so resilient.

Because Lincoln was getting close to being ready to go home, Nate and I had a “practice run” of taking care of him overnight at the hospital.  He truly is such an easy baby and does not really cry, takes his bottle well and just coos and stares at you when he’s awake.  We were in for a treat, though, when he slept.  He is so noisy when he sleeps.  He literally sounds like a billy goat.  Lincoln grunted and groaned and made guttural noises almost the entire night.  I would get out of bed to check on him and see if he was upset but he wasn’t.

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He would be sound asleep but just as noisy as could be.  Half way through the night I brought Piper’s white noise machine into the room to either drown out his noise for my sake or help him quiet down.  Neither worked.  I felt like I was trying to sleep in a petting zoo while the animals were getting their coats blow dried.  Sleep was just not happening for me.  Nate managed to get a decent nights sleep.  I am not sure how he managed to sleep through the animal noises but he did!

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He would wake up when I would wake him up to help with feedings but then he would drift peacefully back to sleep and I would lay there willing myself to sleep through the commotion but that did not happen all that well.  Even though I suffered from lack of sleep for a night (which I should just get used to) I loved that Nate and I took care of our son together for a night.  It made us feel more like parents and really made us ready to bring him home.  I was so hard to peel him from my arms and walk out the door that day.  I just wanted to take him with me.

Since Lincoln’s hernias are repaired and he is recovering so well from his surgery the plan is to bring him home on Sunday!  He does need to remain stable for the next 24 hours and pass a car seat challenge test where they strap him into his carseat and they monitor his oxygen saturation to make sure he is staying about 95%.  If all goes well we will be bringing our first baby home!

Nate and I took full advantage of the fact that we will not have many nights of freedom for a long time and went out for a second to last “last supper”.  As much as we will miss our ability to go to dinner at will, we have dreamed of the day when we would be parents and finally have babies of our own and now we do and one of them is coming home.

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Little Miss Piper Pie, as we like to call her, is doing well but definitely on her own time schedule.  From day one the nurses and doctors told us to expect for her to be the one to come home first as little girls fair a lot better than baby boys in the NICU.  So all along we expected her to continue to plug away and beat her brother home but obviously that is not the case.

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Lincoln, you go home first and scope everything out and then come back and report to me.

She has done really well with not having any bradys for a week now so we are hoping we are out of the woods in that area.  Now she just needs to focus on eating.  She will take an occasional full bottle and then barely drink half of the next.  We are not sure if she is feeling full because she takes in a lot of air during her feeding or if she is too sleepy to eat or if she has a nipple aversion.  We really do not know.  We have spoken to so many nurses, physical therapists and doctors and they all have their own theories and have their own ideas of what may work.  I purchased a different kind of bottle that seemed to help a little bit but has not solved the problem completely.  A speech therapist is going to work with her on Sunday and hopefully she has a brilliant idea of what is going on so we can help Piper take more of her bottles.  Also, we might try to have her eat when she wants (within reason) rather than keep her on an every 3 hour schedule.  I can be really frustrating watching her refuse to do something that she seems to know how to do.  We keep waiting for that call that her “light bulb” has come on.

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I hate how much tape is on her face.  

Piper has been a lot more awake and aware of her surroundings.  She has such big blue eyes takes in the world with such caution.  I am so excited to see her personality start blossoming and see who is hiding inside that 7 1/2 pound body.

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We love you, Piper Pie and we want you home soon.