Wednesday, May 30, 2007

Growing Girl!

Just a quick update... Emily is almost 12 weeks old. At her last weight check she was up to 5 lbs. 6 oz.... almost 5 1/2 pounds!!! We've also moved up in the world of diapers. She's now in a newborn size!! The preemie diapers still fit the best but the newborns hold more... if ya know what I mean!! I've posted her progression from her first NICU diapers, to preemies and now finally Newborns!! Laugh all you want at my silly celebration but we jump for joy with each little gram she gains!!

Monday, May 21, 2007

My Lila Seanne

It seems that the past few months we have been so focused on Emily that I haven't shared much about Lila. She has been so amazing through this whole process and I have been so, so proud of her! She had a few rough spells when Emily was in the hospital having her mom and dad gone so much and not being there when she woke up in the morning or went to bed at night but since we have been home she's been great! She has always been such a loving little girl often taking time out of playing to come give us a quick hug and then it's right back to what she was doing. She is such a good big sister and will be an amazing friend to Emily. Everyone told us it would be hard on her to share our attention and affection with another little person but so far she has not been jealous at all and our only problems have been when she wants to love on her sister a little too much!

Our schedule and routine has changed drastically with Emily's early arrival and unfortunately I have had to have Lila sequestered here with us at home. There are no more play dates, play groups or trips to the park on nice afternoons. We don't get to go run errands, shop the mall and get ice cream or a smoothie for being good. It's pretty much Noggin on TV and playing in the backyard. We've replaced play dates with friends with tea parties with Elmo and the rest of our stuffed animal entourage. It's a lot of cooking in our play kitchen and 'helping' to cook our dinner each evening. Sometimes I feel bad that we are stuck here on beautiful days when we could be out having fun, but she's been a trooper through it all! We've had to miss birthday parties and her favorite of class at church! I try to make each day around the house fun and exciting but there are a lot of days when I am bored out of my mind and I know she must be as well!

I'll post some pictures of our 'fun times' around the house tomorrow but Emily is up from her nap so that's all for today!

The Big Day... Or Should Have Been!

Today, May 21, 2007 is the day that our little Emily was supposed to be joining our family. She should be hours old but instead she is almost 2 1/2 months old. It's amazing how fast it all has gone! We are so blessed to have Emily in our lives and pray that she will continue to greet each new day with strength and courage. This is the prayer I pray for her each day...
Dearest Lord, Give my little Emily victory and be her shield. Guard her course and protect her way. ~Proverbs 2:7-8.
I know God will continue his protection over us all and that all the hurdles the specialists have told us will be in our path will be mere drops in the bucket for Emily is special and God has great plans for her future. Once again let me thank you all for your thoughts and prayers throughout this journey of Emily's life.

P.S. It looks like Emily already has a sweet tooth! We love chocolate around here and love that Uncle Brandt works for Hersheys!

What a Week!

Lila has been sick, quite miserable, with a bad cold and croup. She has been on steriods and breathing treatments for a week now. We have been keeping the girls as far away from each other as possible because we are told that the common cold could still be life threatening for Emily. My hands are dry and cracked from all the times I have washed my hands and my washer and dryer hasn't had much of a break from all the sheets, blankets and clothes I have been washing trying to keep my house as clean as possible. I have even been changing my shirt each time I tend to Lila and then make it back to Emily... it's been a bit of a whirlwind and I thought we were just about over the worst until Wayne came down with a version of Lila's ailments and now we are starting all over again! So far Emily has not come down with anything. We are watching her closely and so is our ped. He even put her on an extra dose of vitamins for the next few weeks to boost her immune system as much as we can.

Emily had her two month check up last week. She still doesn't even register on the preemie scale for her weight which concerns the doc so we are adding more calories with the fortified milk to her bottle feeds hoping she can catch up soon. She currently weighs 5 lbs. 3 oz. at 2 1/2 months old, Only gaining 5 oz. in three weeks (she should be gaining a little more than an ounce a day). At Lila's recent 18 month appointment she weighed in at 20 lbs. 4 oz. still in the 1 percentile for her weight so it could be that Emily is following in her sisters footsteps! She also got her shots, six of them, and the lovely rotavirus drink that she spit out all over me! The shots were terrifying for all involved. The nurse wasn't sure if Emily was big enough to get them having no fat in her legs and little muscle. She double checked got the go ahead and proceeded with the shots. Emily screamed like never before, her little cries usually sound more like a kitten than a baby, and after the third stick turned from purple to white and then passed out on us. Of course I freaked out but the nurse KEPT GOING!! Emily wasn't moving or crying and after the sixth shot the nurse finally got concerned and geared up for infant CPR... At this point I'm no longer freaked out but completely hysterical. After a few seconds and several thumps to the bottom of her foot Emily started crying and I scooped her up in my arms. The nurse went out to find the doc and I started throwing all the things Lila had scattered around the room back into my diaper bag for a quick getaway. The doc convinced us stay for 15 minutes to make sure Emily was okay. A nurse had to come in every five minutes and thump the bottom of Emily's foot to stimulate crying. She never did get her color back and there was talk of sending us to the hospital for observation but in the end they granted my request to just take her home. By the time we left the ped.'s office Emily's legs were swollen to twice their size. I was told she was too small for home administered Tylenol but it seemed like all would be fine since she was sleeping at the time, little did I know two hours later would be a completely different story. Emily woke up later that day screaming. If I held her she screamed, if I put her down she screamed even louder. Her legs were continuing to swell and I felt helpless. I tried rocking her, walkig with her, bouncing, singing, you name it! I called the NICU they told me to call the doc right away. We ended up back in his office for Tylenol and observation. The doc couldn't have been more apologetic and even called later that day to make sure we were all alright! What a start to our weekend!!

There is some good news from last week... I had my appointment with the endocrinologist and after three hours in her office we decided to run more tests, schedule another biopsy, ultrasound guided this time and on both lobes to check both tumors, and canceled my surgery until we can get all these results! Needless to say I am so relieved! She couldn't promise surgery was not necessary and can't rule out cancer just yet but wanted to gather more information before sending me to surgery and removing my whole thyroid. For now I am happy to wait! Besides, things need to slow down around here before more chaos comes our way!

Sunday, May 06, 2007


We have been home for two weeks now. Mom was here for the first week and I have now made it through my first official week alone... Can you say EXHAUSYED? Apparently I'm so tired I'm having a hard time spelling it! Wayne took Lila out for the afternoon so I could sleep and I'm waiting for my ambien to kick in so I can rest up for another long week!

My surgery is scheduled for May 22nd so things are about to get pretty hectic again.. with endocrinologists appointments (i'm having a second and third opinion because I REALLY don't want the surgery), pre-op paperwork, labs, etc. and I have my final appointment with Dr. Petrovski. Emily also has several appointments next as well... she is seeing the audiologist (because it took her four time to pass the screening at the hospital) and a couple of weight checks (she is no longer doing so well with her feedings). If everything goes according to my doctor's plan (I'm still holding out for no surgery) then I'll be in the hospital for the surgery for four days and three nights and come home on some serious painkillers. I've heard the surgery is quite painful..then throw two babies in the mix... I hope he gives me a refill... or two!! Please keep us in your prayers a little longer! The thyroid must be removed because it is the only way to be sure its not cancerous.. I'm just hoping one of the endocrinologists will have a better plan.. doubtful I'm sure but I'm holding out hope. We're really not looking forward to this next chapter in the story of Emily's birth. But what must be done... must be done!

Thyroid Update

Just a quick update on my thyroid situation... My doctor is referring me to an endocrinologist for a second opinion since my case is so unusual. The plan is still to remove the left side of my thyroid since the cyst/tumor is so large. The biopsy and other tests done thus far have come back benign but they are only about 85% accurate and my doctor is still quite concerned because the mass is so large. The only way to know with 100% certainty that the mass is not cancerous is to remove that part of the thyroid and have pathology look at it. The endocrinologist will help us determine what should be done about the right side of my thyroid. It has a small mass but my doctor is hopeful they can save it which will spare me from a lifetime of taking thyroid medication and decrease the risk of damage to my vocal chords during the surgery. More than likely (unless the endocrinologist disagrees) the plan will be to remove the left side of the thyroid and perform a biopsy of the right during the surgery. Should that come back cancerous or inconclusive they will go back and remove the right side a few days later. Again the biopsy will not tell us for certain that the cyst/tumor is benign so this is really the hard part in the decision making process. Ah, What to do?!?!? I've called two different endocrinologists and neither can see me until the third week in May so we have a while to stew over our decision. The good news is we will have several weeks to soak up little Emily and enjoy her homecoming before we tackle yet another phase in this whole process. Pray we will gain new insights from the endocrinologist and the decision will be clear and easy for Wayne and I to make regarding full or partial removal of my thyroid.

By the way... Emily went to see the pediatrician yesterday and got an At on her report card. She is doing very well and has even gained a few ounces since leaving the hospital. She goes back for another weight check in two weeks so we can track her progress. She is taking after her sister, being small for her age, not even showing up on the preemie curve for her weight but we'll get there!!

Happy Homecoming!

After five exhausting weeks in the NICU we were able to bring our little Emily home. Our whole NICU experience was a whirlwind of emotions and steady progress. As we look back at pictures of Emily's first few days and weeks we are in awe of what our Great Lord has done! In Emily's first few days we were merely spectators in her life, not being able to hold her and our touch not soothing and comforting to her delicate skin. In no time at all we were able to hold her but oh so gently because of all the tubes and wires that accompanied her tiny body. We progressed to yet another phase where we felt a little more at ease as we held her and fed her having lost the tubes and wires helping her to breathe. Towards the end of our stay we were required to be more 'hands on' to get familiar with our new little baby and her special care. Now we are home, the final phase, and I find myself holding my breath all over again! I find myself constantly watching her little chest rise and fall both nervous and excited about her breathing on her own without the monitors. With each feeding we make sure she gets down the required 40 ccs in the 30 minute time frame so that she doesn't burn more calories eating than she consumes. Now it's all on us.. there isn't a nurse to take over or a gavage tube to make sure she gets down her minimum requirement. It is a very nervous and exciting time but all is well. Dreams do come true for I have dreamed and longed... my heart ached for this moment... the moment I could leave that hospital for the last time and bring our sweet baby home with us at last! Now I finally have my family together. We are doing very well, Emily adjusting to the loving "pokes" from her big sister and the squeals Lila makes when Emily moves after her poke. Yes Lila, she is a REAL baby! She pretty much sleeps all day and has to be woken up every three hours to eat. Four of her eight feeding each day are with a bottle so that she can get fortified milk (extra calories) and vitamins that turn her milk a lovely shade of green. Bottle feeding Emily can be a little difficult because she has a hard time pacing herself, choking easily and thus forgetting to breathe. There is a certain way in which we have to hold her for these feedings and that in itself is unnatural and adds to the difficulty. All in all we are all adjusting to her special care and getting use to life with a preemie. She sleeps with an apnea monitor, more for my own peace of mind than her needs but I know without it Wayne and I would be getting very little if any sleep at all.

Our discharge instructions had a long list of doctors we will need to follow up with in the next few days, weeks and months. Emily's development will be watched carefully over the next two years until she catches up to other babies her same age. For now we are to always keep her adjusted or corrected age into consideration when hitting developmental milestones. We are told she will more than likely be three months behind when it comes to all the baby milestones such as holding her head up, crawling, walking, etc. Shortly before our discharge from the hospital we learned that Emily did in fact have a grade one brain bleed which was detected in her repeat neuro sonogram. If you remember the first sono was difficult to perform making it hard to get a good picture of her brain due to her overlapping sutures. We have been assured that a grade one bleed is really nothing to be too concerned about. Grades one and two could possibly mean delays in development and learning disabilities. Bleeds of grades three and four could lead to mental retardation, cerebral palsy or even death so we feel fortunate to be on the bottom of the scale. We were told the bleed most likely happened in her first few days of life when her brain was working so hard to try and figure out how to regulate her blood pressure, heartbeat and breathe on her own. Needless to say our hearts were troubled over this news but I know in my heart she will be able to overcome any developmental obstacles and delays this may put in her future. The morning of our discharge she passed her hearing screening (on her fourth attempt) and we joyfully marked our appointment with the audiologist off our list. God was faithful and good to us once again with this great news! The pediatric ophthalmologist could not make it to the hospital for her eye exam before discharge ( I was a little eager to get my baby home) so we had our first outing this morning to his office for the exam. As expected the blood vessels in her eyes are not completely formed yet but "are well on their way" according to the doc. We will follow up with him in two months. We will also be seeing a Developmental Pediatrician so that Emily can be monitored for early detection of delays so that we can do whatever is necessary to get right back on track. We are ever mindful of the power our Great Lord has and rejoice in the blessings He has bestowed on our family. Emily has been a constant amazement to the doctors and nurses in charge of her care and we were told this week that her homecoming was two weeks early at the least. She has always hit the milestones they put in front of her in days, if not weeks ahead of their timeline. We are overwhelmed at the great love and faithfulness our God has for His sweet creation... the miracle of Emily. Thank you everyone for your thoughts and prayers for our sweet baby. The Lord heard our cries and answered our prayers swiftly and diligently. His grace and mercy is unceasing. His steady hand always on us for protection and guidance, his loving arms around us to comfort and ease our burdens.

Not only has the Lord been merciful with Emily but with me as well. The ultrasound on my thyroid showed a mass of both fluid and tissue measuring 6cm on the left side and 2cm on the right. Basically my whole thyroid is a cyst/tumor. My doctor ordered further tests to determine if my thyroid was functioning and did a biopsy in his office. He told us surgery was necessary for the left side but he was hopeful he could save the right side of my thyroid. I was scheduled to have a thyroid imaging test done on Wednesday but Wayne and I decided to forgo this test when we learned I would not be able to nurse or be around my children for four days because of the radioactive iodine they use in the test which is emitted from the tissue that absorbs it. With Emily's discharge that same day I felt the test was too much to ask of me and decided to just schedule the surgery and have my whole thyroid removed. We found out this morning that my biopsy came back benign and the lab results show my thyroid is slightly overactive, which means it is functioning but having to work a little too hard. I have an appointment on Monday to discuss possible surgery and treatment. We are hopeful surgery will not be necessary. I am overwhelmed once again at all the kind words, thoughts, prayers, cards and emails as we have dealt with yet another unexpected hurdle with this whole thyroid situation. I will send out another update (hopefully our last one) on Monday when we meet with the doctor and decide our course of treatment from here. We look forward to the day when this is all behind us and we can settle into life as a family of four and enjoy our two sweet, precious girls!

I'm attaching a few pictures... Thanks Aunt Shannon for the cute bow! You know my motto... The bigger the bow the better!

Emily's Coming Home!

Samantha and Wayne are at the hospital, so it's up to me to give you an Emily update!

The last few days have gone by very fast for us. We have been excited. We have been apprehensive. And today we have been on overload.

Over the weekend, the nurses started hinting that Emily might be getting ready to go home soon. It all started Saturday afternoon when little Miss Emily reached up and pulled out her feeding tube - again - and the nurse practitioner decided to put her to the test and see if she could manage all eight feedings. Surprise - she did!! So, much to our amazement, Emily is scheduled to come home tomorrow! There are a few conditions such as no visitors and no going out for a while, but I think because Samantha and Wayne have been on the go so much the past five weeks this will be very easy for them.

Emily now weighs 4 pounds, 8 ounces.

Emily passed the hearing test for her right ear, but failed the left ear. We are hopeful this was fluid or such.The test was to be repeated today, but we were so busy discussing other issues, we forgot to ask the results. I'll try to find out and let you know later.

Last night we took the mandatory CPR course for preemie parents. I was included out of pity! Thanks to the Gentry's for watching Lila, for I did learn quite a bit!

Samantha went to the doctor to find out about her thyroid. Bottom line - surgery to remove the left side, tests to decided what to do about the right side. Today she had a biopsy and bloodwork. Tomorrow morning they will do an in depth sonogram which will help determine the course of action. Hopefully on Friday we will get results and find out if all or just the left side of the thyroid needs to be removed. The results will also tell whether this needs to be done right away or if we can wait another month or two. We spent much of the late afternoon setting everything up and trying to figure out what this means to Emily, as the test tomorrow requires dye in an IV. Once again, I cannot say enough about the concern and compassion of the NICU nurses toward Samantha and her situation. They have been so helpful today, finding answers to our questions and support as well as solutions. I will never forget them and their wonderful care.

Samantha and Wayne are "rooming in" with Emily at the hospital all night as planned.

Emily may come home sometime in the afternoon. Emily may stay another day so Samantha and Wayne can recoup from today's overload.
I'm guessing Emily will come home tomorrow!!

We praise and thank God for all He has done for us.
We thank Him for giving us such a wealth of support in all of you.
Please pray for us tomorrow and for the tomorrows to come.
In closing, I want you to know how amazed I am at Samantha. As tough as today must have been, she showed incredible stregnth and resolve. Her main concern was and is how everything is going to affect Emily. Please join me in praying for her to enjoy Emily's homecoming to the fullest!

An Update from Mimi

I am sorry this has taken two days to write - time just seems to get away from us quickly.

Hello to all our family and dear friends -
Yesterday was Emily's very first Easter! She dressed up in her pretty yellow bunny dress, and two somebunnies gave her little bunnies to hang out with her in her isolet. She looked so precious, I wish you all could have seen how sweet she looked. We think we took a picture (but it was a hectic day) and if we did, we will try to email it out soon. It was also Samantha's birthday and Emily had a surprise for her mom hanging over her bed. She had helped her nurse Mary make a birthday card! She contributed two little handprints and two little footprints and I'm pretty sure she told Mary to write the birthday greeting. Sorry to bore you, but it was so nice. You see why we say God has sent special angels to care for all of us, not just little Emily!
Here's our latest praise list:
Emily is now in a regular isolet! Goodbye Omni bed, hello Holiday Inn! She is maintaining her body temperature all on her own!!
Emily is learning to eat very well, and is taking 2 feedings a day from her mom or a bottle. The rest of the feedings are still with the feeding tube. The nurse said the exhertion from one feeding is the same as us running 5 miles. This is the reason we are having to go slowly with only 2 feedings out of 8 - we have to conserve calories and gain weight instead of working it right off again!
As of last night, Emily weighs 4 pounds and 6 ounces, and is 18 and one quarter inches long. She is growing! They said the weight can fluctuate several ounces, depending on when they weigh her, but they want her to start gaining one half to one ounce a day now. It doesn't matter, as long as she stays on an upward curve. There is no magic weight for going home. It unfortunately is much more involved. Emily must be 5 days without a brady. We are not there yet, so please keep praying specifically for this. Also, she must be able to take her feedings without the gavauge - either from mom or the bottle. This will be the slowest because of what I mentioned above.
Last night, Samantha and I went to the hospital for Emily's 8:00 feeding and afterward her nurse Mary suggested that Samantha give Emily a bath! I wish you could have witnessed this event! We were nervous at the prospect, but Mary seemed to have such confidence in Samantha that she gave it a try. When you go to the NICU, you really never know what to expect. You may be told not to pick her up so she will be conserving calories, and you may be asked if you'd like to give her a bath! It occurs to me that this is where the nurses are so wonderful. They want the moms to learn to do the routine daily things and not be nervous because their baby is so tiny. They orchestrate things for success, and gently guide and help, the whole time making you feel as if you just accomplished the greatest feat! After the bath, we were even on our own (I saw Mary watching us on the other side of the curtain) to reattach all the monitors. Then we couldn't figure why the machine didn't start giving data. You have to laugh at how carefully and seriously you try to do everything just right, but forget to turn the machine back on!
We can't express to all of you how much we appreciate you. We thank you for the uplifting emails and for the encouraging phone calls. Most of all we thank you for the prayers.
We are so thankful Emily is doing so well. Please continue to keep all of us in your prayers.
Before I close, I want to ask for your prayers for Samantha. Because of the schedule she is keeping right now, I know she must be exhausted. One of Emily's nurses reminded Samantha that God doesn't give us more than we can handle. Of course Samantha's main concern right now is Emily and getting Emily home.
Please pray for Samantha's health, for her appointment on April 17th, and for the peace that comes with taking one day at a time as we put our trust in Him for all things.