Friday, December 16, 2011

Merry Christmas!

Merry Christmas from our family to yours!!

Sister toes

Britian's toes 
Jillian's itty bitty toes

Tuesday, December 13, 2011

Teeth all around

I am happy to announce that Britian and Jillian both got their both two front teeth today. Jillian was more fussy than normal today which I attributed to the cold she has been battling but now I know it was more than just her cold. Hopefully now that their teeth have come in the will both get back to their normal sleep schedule. My kids typically get their teeth in rapid succession and have 6 or more by their first birthday so this may just be the beginning of a very long winter filled with colds and teething.

Wednesday, December 7, 2011

10 months old!!

Well technically they will be 10 months in 2 days but I've got a moment to post an update now and not sure I'll have one again in 2 days so I am doing it now. :)

As you will see in the pictures below both girls are getting very big. Their next Dr. appt is next week but Brit should be pushing 18 pounds or more and Jillian is well about 14. Just from holding them I can tell they have both gained a bunch of weight since our last high risk appt the beginning of November. Jillian most of all has really filled out which I couldn't be happier about. The more weight she puts on the better it is for her lung growth and development. Both girls have been stable and healthy for the last couple of weeks which has been a huge blessing. I avoid taking them anywhere I absolutely don't have to though now that cold and flu season is upon us. I am hoping that becoming hermits for the winter will help them get through this season as healthy as possible. And on a lighter note both girls are doing awesome with their reflux and seem to be outgrowing the worst of it. Because they are doing so well it also means that they are both sleeping in their cribs all night, no more swing sleeping for either girl.

So without further ado, here are some recent pictures of our little blessings.

Brit pulling on Jillian's cannula

Brit sleeping

Jillian crashed out in her high chair after refusing to nap all day

Some days it is rough being Jillian

Sunday, November 13, 2011

On the Mend

I just wanted to update everyone real quick. . .

The girls are both on the mend with their colds, especially Jillian who got hit the worst. There is no more coughing or congestion or yucky mucous to deal with. The next month or so they will still need meds to maintain their healthy lungs but so long as we are not dealing with the bad stuff I am a-ok with giving them an inhaler twice a day to maintain the status quo.

Thank you for your prayers, they have definitely been answered.

Saturday, November 5, 2011

Preemie Lungs and Winter Do Not Mix Well Together

As I've mentioned in previous posts the girls both have colds. We are on week 7 or so of the girls both dealing with one virus or another. If I've read their symptoms correctly we are on virus #3 or so. They catch one cold and get better from it only to catch other virus before totally getting over the previous one. It has become a viscous cycle. Fortunately it seems as though Britian is on the mend thanks in part to the medication that was prescribed earlier this week. Her breathing is much easier and she isn't coughing all night like before.

Jillian on the other hand did not improve when we started the same medication earlier this week. Her breathing was of such concern to me yesterday that she saw an on-call pediatrician (so happened to be the one that was on call the night the girls were born) in the night clinic. He agreed that she was still wheezing so we did a breathing treatment there in the office which seemed to help improve her lung sounds a bit. Ultimately he prescribed an oral steroid and a nebulizer, both to help with her breathing. He also prescribed an antibiotic the help with her nasal congestion and to clear up an ear infection that might have been starting. So currently my little peanut is on 4 different medications, all of which have to be staggered at different times and given a minimum of twice every day. Needless to say, I've taken to writing down the times I give her each of her medications so that I don't miss a dose and also so I make sure that I am not giving certain medications too close to each other.

My baby girl needs lots and lots of prayers again. Her little lungs are struggling and Winter hasn't even officially begun. I sure hope this isn't a sign of what is to come this season. Thankfully, after just a day of the new regiment of meds her breathing is much better and she actually slept decent last night.

Wednesday, November 2, 2011

8 month update

Yesterday the girls and I made the long drive back to the "big city" for their high risk check-up. Both girls are growing and developing wonderfully.

Britian is a whopping 16lbs 11oz and nearly 26"

Jillian is cruising right along at her own pace. She is 13lbs 3oz and 24" long.

When we left the nicu 6 months ago neither girl was on the growth chart. Now not only are they both on one curve or another but from one appointment to another they are jumping curves. At nearly 17 pounds Britian is 50% for her adjusted age weight. Even my peanut Jillian is on the curve somewhere for all of her measurements. After starting life so small it does my momma heart good to know they are growing so well without medical intervention.

We did learn yesterday that both girls are RAD. No, not rad like back in the 80's but RAD as in reactive airway disease. Considering their lung issues this really is no surprise and will impact their lives minimally. They have inhalers now and are using them twice a day for the next month or so. As I mentioned in a previous post they have a cold virus, yep for 6 weeks now they've had a virus to one degree or another. At yesterday's appointment they had "musical wheezing" as their neonatologist put it, not the typical one tone wheeze but rather a nice musical one with a variety of tones. The inhaler will help clear up their lungs and maybe even help their sinus congestion which I am all for!

Developmentally both girls are doing great which is always nice to hear. As a micro preemie parent, fine and gross motor development is always on your mind.

Thank you everyone for your continued prayers and words of support!

Monday, October 31, 2011

From the Nursery Window

From the nursery window I've watched the world go by.
I've seen barren trees, brown and dull, grow beautiful green leaves, so lush and full.
The tree nearest the window was lifeless and dull, then it grew whirlybird seeds and aspen shaped leaves.
I've heard the wind howl, watched the rain pour down the window, and marveled at the lightening on the      horizon and jumped at the sound of thunder over head.
Flowers have come and gone.
I've told time by the fireflies dancing in the air.
I've laughed at the robins hopping across the street.
Sunrises have made me smile and reminded me of the blessings that are all around.
The leaves are turning now and leaving with the wind.
Soon the white stuff will start to fall and from the nursery window I will give thanks for the blessings that fill my home.

Happy Halloween!

Happy Halloween from my family to yours!

My 2 little lambs, Jillian and Britian

 my Dorothy, my clone trooper, and my Army man 

Saturday, October 29, 2011

Recent Pictures

I know it has been a while since I posted new pictures of the girls and for that I am sorry. I know you all understand though that life is far from slow and boring in our house. The girls continue to grow, delight, and develop everyday. In a few days the girls will have a high risk doctors appointment. As always they will get weighed and assessed for their overall growth and development according to their adjusted age which is about 6.5 months.

In my last update I mentioned that the girls were battling their first cold virus. Well, it is still lingering. Thankfully they seem to be pulling through it and are on the tail end of the fight. Poor Jillian got it the worst and for a while there it was really affecting her appetite and growth. I definitely noticed a halt to her weight gain for about a week. Thankfully though she is back to her normal eating habits and for the most part is keeping the majority of her bottles and solids down despite her periods of reflux. I will of course update with their new weights and overall development after our appointment early next week.

Britian @ 8 months

Jillian @ 8 months

My 2 smily girls; Jillian and Britian

Thursday, October 13, 2011

Battling Their First Cold Virus

3 weeks ago I took the girls to their first group setting which included other little kids. Our homeschool group was having a co-op class so I stayed with the twins and my 4 year old in the nursery while my older boys wen to class. Wouldn't you know, Brit caught a cold and then generously gave it to Jillian. The girls were doing good fighting off the virus until a few days ago. Yesterday I decided to take them to the pediatrician to make sure they didn't have an ear or sinus infection. Thankfully both girls have clear ears but Brit's lungs were a bit hoarse and Jillian is beyond congested (which I could already tell). It is always so hard watching your little baby struggle with a cold. Hopefully the girls will be on the mend soon, I am ready for them to start sleeping at night without waking up coughing every few minutes.

Wednesday, August 31, 2011

Getting so big!

Both girls are getting so big. Here are a couple of pics of Britian, her development has taken off the past few weeks. From the looks of it I know that crawling is just around the corner. Sometimes it seems like the days of them fitting in the palm of my hand was just yesterday, now look at my big girl. :)

Friday, August 12, 2011

6 month update

Wow, it has been quite a while since my last post. No real surprise to me though, life has been busy. I will do my best to hit the biggest highlights from the past 2 months.

1. The girls are 6 months old and growing like weeds. Brit is tipping the scales at 12pounds and Jillian is well over 10 pounds now.

2. Jillian's pulmonary stenosis (narrowing of a valve to goes to her lungs) is stable and her cardiologistdoesnt want to see her until her 1st birthday. So long as it stays stable or improves she will live a normal and active life.

3. Jillian's hearing is just fine, she had a ton of ear wax in both ears which was preventing her from hearing the infant screening test tones.

4. Britian should be off of her oxygen next month. She did well at her last exam with the 2 hour no oxygen test but the dr. Wants her to be off for 6hours or more before making the decision to take her off. Jillian's oxygen was decreased at the same appointment to half a liter from three quaters.

5. Jillian is sleeping through the night. Yeah!

6. Smiles and lots of them. The girls have found their beautiful smiles and their voices. It is so much fun to talk and interact with them more.

7. And on a personal family note, we are expecting again. Yep, there is another blessing on the way for our family. I am due March 3rd but will have a c-section before the girls turn one year, on or around February 4th. Because I am pregnant again so soon after an emergency section I am at risk for uterine rupture so I have to deliver at 36 weeks to prevent this serious complication.

I think completes the updates for now. I will upload new pictures of the girls as soon as I get a free minute on my desktop.

Monday, June 27, 2011

Favorite Gear for Multiples (so far)

Caring for twins is a baby gear intensive process. Babies alone require a lot of stuff day-to-day but when you care for multiples the amount and size of the gear can get overwhelming. I've been down the baby road before but I am using and learning about new things everyday in order to make life easier with the twins. When I was pregnant and searching for recommendations and reviews for twin gear I found almost zilch from real life Moms who were also caring for older children. So here is my personal opinion on some must-haves and some "makes life easier" things when you have been blessed with multiples.

Diaper bag: after going through more bags than I care to admit I FINALLY found the most amazing diaper bag. The Petunia Pickle Bottom Wistful Weekender (Moonlit Moments) (other styles available) is hands down the best diaper I have found for multiples so far. Not only is this bag stylish but it is roomy in all the right places. It includes an easy to fold changing pad and brand name plastic wipes holder. This bag is full of pockets and includes a zippered pocket on the inside as well as two smaller pockets on the outside near the handles. I like the outside pockets for stashing my cell phone and keys which I hate having to dig around for when I need them. Day to day I carry 2 of all the essentials in this bag and still have room to spare to stash anything my older kids might need; 2 blankets, 2 outfits, 10-12 diapers, 2 hats, 2 bibs, 2 burp cloths, 4 pacifiers, 2 receiving blankets, lots of hand sanitizer wipes, pacifier wipes, hand lotion, 2-6 bottles in an insulated bottle holder. As I mentioned I carry all of this everyday and still have plenty of space to stash a large camera or anything else I might need for the day's special outing. Best of all when full this bag will not throw out your back like so many other bags I've tried already.

 Diaper pail: for my older children I never saw the need to justify using a diaper pail, I just changed and tossed in the nearest trash. Twice the diapers means twice the smell and mess so the Munchkin Arm and Hammer Diaper Pail, White has been a wise investment. Not only does this diaper pail hold a ton of diapers it securely contains all the stink so you'll never know there are dirty diapers stashed in your nursery.

2 baby swings; I had my doubts whether I'd actually need two swings but man am I happy we ended up with two now. There are some days when for one reason or another I need both arms free to get something accomplished around the house (cooking dinner, making a boo-boo all better, etc) and that is when having two swings have justified the expense. Even if your multiples are your only children there will be times when for one reason or another your babies don't want to be held but need some gentle rocking, this is when the swings are priceless.

Infant stroller: I chose the Baby Trend Double Snap N Go Stroller Frame, Black because I've used the snap n go strollers with my older children and have always loved the ease of just snapping on the infant carseat and quickly moving on to whatever it is we need to accomplish. With 3 older children I am always on the move so quickly getting out of the car and getting all 6 of us moving to our destination safely is crucial. Little did I know how wonderful the roomy cargo area would be when I first purchased it. The cargo area holds 2 oxygen tanks, 2 apnea monitors, and still has room for a small basket worth of groceries. This stroller quickly collapses with one hand and also snaps open with only one hand; very nice when you are juggling a toddler, groceries, or the large diaper bag. My only complaint about this stroller is that it doesn't steer with one hand, you need both hands on the handle bar to get around corners or push straight, but this is to be expected for a stroller that is carrying a heavy load.

There are lots of other smaller things I use on a daily basis that I will review and outline in a future post.

If you are a Mom of multiples or are expecting multiples please do not hesitate to contact me with any baby gear (or other) questions.

Monday, June 13, 2011

4 months and Full of Life

This past week the girls turned 4 months. Looking back over these past 4 months a whole host of emotions comes flooding back. It seems like such a long time ago yet at the same time just like it was yesterday that our life changed forever when the girls were born long before we had planned. Long before we had planned but not before God had planned.

I am happy to report that the girls are growing wonderfully. Britian is a whopping 8lbs and Jillian is 6lbs 8oz. They are both continuing on their respective growth chart lines according to their pediatrician, but for the record I don't give a flying hoot about growth curves for these little peanuts. All that matters to me is that they are growing, developing, and progressing everyday. Britian is over 2 pounds heavier and Jillian is almost 2 pounds heavier than when we came home 5 short weeks ago.

Our next visit with high risk is not until the middle of July so there will be no changes (if any) to their oxygen until that time. I am praying that their lungs will have grown and developed enough by then to at least wean a little bit on their oxygen requirements. We need to make progress in this department if there is any hope of coming off of these tubes anytime soon. Which by the way I've been told they will most likely be on oxygen for their first year.

Thursday, May 19, 2011

Long Day of Dr. Appointments

Yesterday was a VERY long day of Dr. appointments. Jillian was the reason for two of the three appointments we had to attend yesterday. Britian was along for the ride and only had to subject herself to the last of the three appointments. First off for the day was a sweat test for Little Ms. Peanut. Her newborn screen tests came back with an elevated marker which can indicated Cystic Fibrosis. Britian's was higher than normal too but not nearly as high as Jillian's. So as a result Jillian had to go through the sweat test which is the standard first step for testing for CF. She is barely over the 5lb requirement for this exam so our hopes were not high that she would sweat enough to get good results. Our suspicions were confirmed when NO sweat absorbed on to the collection discs.

Now let's step back a minute so I can explain some personal history so that the next turn of events makes more sense. Before having children I was a biological researcher. I have worked on numerous projects but the biggest and longest of which was for the company that currently has a CF drug in late stage clinical trials. I was a biologist on the team that developed that drug so I know a little something about Cystic Fibrosis. I know my daughter doesn't have this disease.

Keeping all that in mind we still had to jump through the first hoop because of the newborn screening. The screening sent up a red flag in the state's system so we had to atleast attempt to close this issue. When no sweat appeared on the collection discs I told the nurses that I would not be subjecting her to anymore testing for this disease. The marker that the girls scored high for (immuno reactive trypsin, IRT) can also be elevated because of stressful delivery. Anyone that reads my girls' birth history will know that it is definitely classified as a stressful on. No one knows why IRT is elevated after a stressful birth only that the correlation has been shown. Everyone on Jillian's care team is in agreeance with me that no further tests need to be done to rule out CF.

The second appointment for the day was to test Jillian's hearing. While in the NICU Jillian did not pass hearing tests in both of her ears. Her right ear failed once and passed once while her left ear failed twice. The exam yesterday was to test both ears again to get true results. After the exam she passed in her right ear and failed (as I expected) in her left ear. We have a follow-up appointment in August for a more thorough exam on her left ear. It could be fluid in her ear or nerve issues causing her hearing loss. Ear tubes, hearing aide, or other devices may be necessary to remedy her hearing so that normal language and brain development can occur.

The final and longest appointment of the day was "high risk". High risk appointments are for all preemies that spent a considerable amount of time in the NICU. On the docket for this appointment was normal growth and development checks such as weight, length, head growth, muscle tone, reflexes, and oxygen tolerances. No changes were made to the girls' oxygen requirements, both clearly still need the amount of O2 that they are on. Reflexes and muscle tone look great for their age. Jillian is 5lbs 6oz and below the growth curves for her adjusted age. I know that she will most likely always be little, I am not worried a bit about her being off the curves. She is growing and developing and that is what is most important. It takes all shapes and sizes to make growth curves, some big and some little. Jillian is just in the little population, not every baby is going to be "average". Britian is 6lbs 5oz and is average all around for her adjust age. She is HUGE by all comparisons to what she started at. She is the same size as any normal term baby with huge kissable chubby cheeks.

All in all it was a good day and the girls did great being away from home for so long. Note to self though, I will not be wearing high heeled boots to anymore appointments, my feet were killing me at the end of the day. :)

Thank you for your continued prayers.

Sunday, May 15, 2011

No News is Good News

Brit and Jillian in their going home outfits
Can you tell the girls and I are home now? Gee whiz, I haven't had any time to sit down for more than a minute or two and post here. So sorry. But rest assured that no news means good news. The girls and I arrived home safely over 2 weeks ago and life has been on the move ever since.

Two days after being discharged we moved into a newer and larger house. The girls and I came home to the new house and lived in one room temporarily until the rest of our furniture and belongings arrived from the other house. I am so thankful that the girls learned to sleep through every level of noise because we certainly did not come home to a quiet house. Because of their lung issues we had the carpet removed from the main living area and hardwood floors laid in its place. The floor installation was in full force when we arrived home, not a quiet process at all. But God's hand was upon us yet again and the floor was able to be completed despite an unprecedented short timeline for completion.

My husband came down with the flu on the day of moving but our friends rallied around and got us moved in one trip. What a blessing each and every one of them was to us that day. We are slowly settling in to our new house. Taking care of the girls, managing the house, and caring for my older 3 leaves me just a little bit of time each day at the most to unpack, sort, etc. But I know it will come together eventually.

The girls are doing wonderfully at home. Both have broken into new pound categories. As of this past week Britian is now 6lbs 4oz and Jillian is 5lbs 4.5 oz. They are growing and getting stronger everyday. I marvel at them everyday, they are truly little miracles. They might be twins, conceived from the same egg but their personalities couldn't be more different. It has been so much fun watching their little personalities emerge from their shell. Britian is the stronger, louder, and more vocal one. While Jillian is calmer, self-soothing, and laid back. Her voice is starting to emerge though. My oldest asked how I can tell who is crying without seeing them,  I just can. Their cries are very distinct to me.

We are not supplementing their milk here at home. In the NICU they received 27kcal breastmilk with human milk fortifier added. Here at home I was supposed to add Neosure formula to half of their bottles everyday. That lasted maybe 2 days, they were both in so much pain that I stopped as soon as I verified the cause. They continue to gain on just my milk so we are going to stick with that and I couldn't be happier. I love knowing that they are getting my milk naturally as God intended.

I will continue to update on the girls' progress as time allows. Thank you everyone for your prayers and words of support. Please keep us on your  prayer lists. We desperately need these girls to stay healthy and free of viruses.  

Wednesday, April 27, 2011

End of the NICU Roller Coaster

Britian, 11 weeks old
Jillian 11 weeks old
 So long ago but yet it feels just like yesterday. 11 weeks ago, two little girls were born 14 weeks early. Both weighing less than 2 pounds they were in for the fight of their life. People around this country dropped to their knees and began praying without end. Time and time again throughout these 11 weeks medical issues would arise but the prayer warriors all banded together and flooded Heaven's gates with prayer for these 2 precious miracles. Without faith, hope, and prayer I know my girls would be facing a much more grim future. Instead the future is as bright for them as had the been born full-term; this in and of itself is a true miracle.

 I am so happy to announce that today is our last full day in the NICU. Tomorrow is discharge day, our final graduation step as we march into the sunset and embrace all that life has in store for us. 11 weeks and 1 day is the official count for our NICU roller coaster.

 In the beginning I had mentally prepared myself for 16 weeks or more of this emotional trip. God had a very different plan for my girls though. Fighters they are and hopefully fighters they will always remain. The strides my girls have both made in 11 weeks is simply astounding. The simple fact alone that they are both coming home on the same day is overwhelming. So many days and nights as I sat at their bedside and worried I prayed that God would prepare them to leave on the same day. I simply could not bear the thought of leaving one here while the other went home. My prayers have been answered not only for this issue but time and time again within these four walls. God's grace, mercy, and love shine through in our story. I don't know why He chose my family and I for this journey but I am looking forward to finding out all that God has planned for my girls and the rest of my family.

 Of course I will continue to update this blog with information and developments about Britian and Jillian. I plan to also share from a Mother's perspective the ups and downs of mothering twins and a large family.

Thank you from the bottom of my heart for all of your prayers, well wishes, and thoughtful words of encouragement these past 11 weeks. There were days that nothing else sustained me other than knowing that so many were praying for us.

With Love,

Sunday, April 24, 2011

Watch Me Grow Part #2 0 - 10 weeks

Jillian 1 day old

Jillian 10 weeks old

Britian 1 day old

Britian 10 weeks old

I sit here in awe over these two little miracles.
 Our Mighty Healer and Creator has knitted my girls together so perfectly.
 I am humbled and blessed to be their Mother. 
I have had the incredible opportunity to watch God knit my girls together each and every day.

Happy Easter from the Girls

Happy Easter from Britian and Jillian!! 
We hope that you all had a very blessed day of resurrection.
He is Risen!!

*Yes, I know there is debate amongst the Christian community about what to call the day that Jesus rose from the dead and ascended to Heaven. Personally, I do not worry about what to call today but rather it is more important to remember the true meaning of this day. Jesus has risen and will come again. I don't believe He cares what we call today as long as we believe that He is Risen.

Thursday, April 21, 2011

Possible Transfer and VCUG

As I eluded to in my last post the stress is mounting. Various situations and circumstances are present in our lives which are adding to the already stressful situation of having twins in the NICU for so long. To help alleviate some of the stress we may be transferring the girls back to our hometown NICU. It will be an adjustment for sure but one in which I am hopeful will be for the best. A few things need to be finalized with the girls' care here before the transfer is finalized and scheduled. One of which is Britian's VCUG. A couple of weeks ago when her renal ultrasound came back normal and showed that her hydronephrosis had resolved I was told that a VCUG would not be needed. Well like so many other things I've been told during this roller coaster that too was incorrect. Britian's VCUG is scheduled for tomorrow afternoon. The VCUG is going to look for urinary reflux or backing up of urine into the kidneys. Their nurse practitioner and neonatologist both agree that it is highly unlikely that Britian has urinary reflux because she has not been on antibiotics for over 2 weeks and has not developed an urinary tract infection. But nonetheless, the renal experts want a VCUG just to make sure. If all goes well they will be transferred as early as Monday. The NICU in our hometown will be quite an adjustment but I am hopeful it will only be short-term and will be the best for everyone involved, most importantly my husband and 3 beautiful children at home. So there will be lots to do between now and their transfer date. After spending over 10 weeks living here during the week I have quite a few of my own loose ends to tie up before I bid a tearful farewell to the nurses and staff that have taken such good care of us during this long haul. I will most certainly have to stop by bays 1 and 2 before I leave to thank all of the nurses that have been my shoulder to cry on, listened to me vent, and shared many a laugh. And of course a sobbing see you later to the VERY special nurse that has made me laugh from the first moment we met, taken me out to lunch and shares a birthday with my girls.*

*written with tears running down my face

Wednesday, April 20, 2011

Week 10 Update

I know it has been forever since I posted an update on the girls. Life has been busy and very stressful.

Weights: Britian is 5lbs 2oz; Jillian is 4lbs 5oz

Britian is in a crib and doing very well maintaining her body temperature. Jillian has 45g to go before she can be moved into a crib. At her current growth rate that might happen by this weekend.

Both girls are on regular nasal cannula. Britian is on 0.5L and Jillian is on 0.75L oxygen flow. This has been a wonderful step in the right direction. No longer are their oxygen saturations all over the place. Now they are both saturating wonderfully which is better for their growth and development.

ROP checks were today (eye checks). Jillian's left eye has gotten better. For the past 3 weeks it has been zone 2 stage 1, but now it has improved to zone 2 stage 0. This means that her oxygen management status is lower because ROP progression is oxygen sensitive. Britian's eyes remain the same at stage 2 zone 0.

The girls are nursing and starting to take bottles. Nursing here in the NICU is not an easy task so I am leaning towards not nursing as much and just giving them bottles. I think offering them more bottles of my breast milk will get us out the door sooner since it is less work on their than nursing. Both girls need to be on full feeds orally every 3 hours before we get the green light to leave. This is proving to be the biggest emotional hurdle for me in this journey. Even through all the worrying I did about their brains, hearts, etc., I just think I am at my limit with this NICU journey so to have one more hurdle to jump through is proving difficult to cope with. Their oral feedings are so sporadic and progress is very slow. I know they need to rest and grow so tube feedings are still needed but I just wish that I could snap my fingers and have them doing wonderfully with all of their oral feeds.

Estimates for discharge range from 2 week to a month. 2 weeks I can deal with, another month here is a bit much to put my head around. Another month would make 3.5 months inside these 4 walls. The stress is taking its toll on my family, I've cried everyday this week so far. Another month is just too much to grasp right now. I am on my knees in prayer everyday asking for strength and wisdom. He will get us through this situation and into the sunset I will march with my 5 kids and wonderful husband.

Tuesday, April 12, 2011

Twin Cuddle Time

Yesterday the girls and I got to cuddle al together for a very long time.
 It was such a special time for the 3 of us.
 Here are a few pictures of our fun bonding time.

Britian holding Jillian's wrist 

Sunday, April 10, 2011

A Week Full of Blessings

I'd first like to apologize for not updating or posting pictures last week. I inadvertently left my camera cable at home last weekend so I wasn't able to transfer any new pictures to my computer. Updates are boring without new pictures so I waited to post an update until I could share new shots of the girls with you.

It was a week full of amazing blessings and answered prayers. Both girls are growing incredibly well and graduated to the next pound level last weekend (4lbs for Brit and 3lbs for Jillian). We were also able to wean both girls on their high flow settings without setbacks or changes to their oxygen requirements. Because their high flow settings were able to come down so low last week the girls and I were able to start nursing. Thursday was Britian's first day at once per day. Friday she did so well that she only needed half of her normal feeding volume for that feeding time. Jillian was given the green light to nurse late Friday but today (Sunday) was the first day we were able to try because I go home for the weekends to be with my husband and older children. I am happy to announce that Jillian did amazing today for her first attempt and only needed half of her normal feeding volume. Britian has also been given the go ahead to nurse 3 times a day, once every 8 hours, if she is awake and interested. Nursing in the NICU is very much "baby led". The girls are in the drivers seat with their nursing sessions. The more eager they seem the more they will be allowed to do it. Not only am I thrilled to finally be nursing my precious miracles but I am relieved that they are tolerating the effort it takes to nurse so well. There is no gagging, desaturation of their oxygen, or other negative signs which can often times occur in babies so young and so small. Britian was intubated for over 6 weeks and prolonged intubation can lead to oral aversion but thus far Britian is showing no signs of her intubation experience affecting her at all orally.

Britian's first tub bath
Current weight for the girls is: Britian 4lb 10oz and Jillian 3lb 13oz so they are both very close to yet another pound level graduation.

I worked very hard last week advocating for the girls and their medications. I just knew in my heart that the medical staff here was giving them more things than they really needed. So last week Britian's antibiotic (for her previously suspected kidney issues) was discontinued as well as her sodium chloride (salt). So as of now the girls are only receiving addition iron. The iron is to prevent anemia. If we were at another NICU they probably wouldn't be getting the iron but here they are very "pro-vitamins and minerals". Even full-term babies are sent home with an oral multi vitamin. (I'll keep my opinion on this matter to myself but just know I don't agree with it)

Lastly and most importantly, this past Saturday I received news that took my breathe away and left me speechless. Saturday during my normal call for an update I received word that both girls were healthy enough and doing so well that they were ready to be transferred to the lowest level acuity area of the NICU in preparation for discharge. Last Wednesday was the 8 week mark for this journey. I have been expecting a 4 month stay since the very beginning, which would give us another 8 weeks atleast. However, based on what I know about this NICU I am pretty confident that barring no setbacks the girls will not be in this low level room for another 8 weeks. Might we possibly be home around my original due date in a little less than 5 weeks? No telling yet but sometime in May for a discharge date is looking more and more likely everyday. I still can not believe that my girls are out of bay 2 already. Brit was only there for 2 weeks. We serve an amazing and awesome Creator! Day after day He hears our prayers and is answering them time and time again. Just a few short weeks ago I was praying for the girls to graduate out of the highest acuity level NICU area now here we are not knocking on the door of discharge. It just doesn't sound real to me. Are my girls both really doing that well? I am thrilled, shocked, and overwhelmed all at the same time.

Mommy and Jillian

Thank you everyone for your prayers. God is answering our prayers for these 2 precious miracles!

First tub bath for Jillian

Jillian practicing for nursing (suck on finger and milk in syringe)

Friday, April 1, 2011

Week 7 updates

It has been a week full of ups and downs. By His provision thankfully our downs are no longer nearly as low as they were in those first few weeks. One day late last week I was sad and frustrated with some issues presenting themselves but through prayer and time in thought I was reminded of how far we have come in just 6 short weeks. When I was once worrying brain bleeds and heart issues I am worrying about much smaller issues and for that I am thankful.

Our praises for this past week include:

  • Britian successfully put on high flow. CPAP was not nice to Brit's little nose and I prayed for a better solution when it became obvious that she was failing CPAP. Over this past weekend God gave guidance and wisdom to her nurses and nurse practitioner and she was subsequently put on high flow nasal cannula. She is doing better then I could have ever expected. Her oxygen levels are where they were when she was taken off of the ventilator, nearly at room oxygen levels.
  • Jillian was also moved to high flow this week. So far she is doing wonderful. Her blood gases look great and her lung xray are clearer than we've seen in a long time. She started on 4 liters of high flow but was weaned to 3L when her xray showed good expansion.
  • Continued growth for both girls. Britian is 3lbs 11oz and Jillian is 2lbs 15oz. They are both very near to graduating to the next pound. Yeah!!
  • Wearing clothes. Yes, in the NICU when you are a micro preemie, wearing clothes is something to give praise for. Why? Well simply because it means you are doing so well and are starting to maintain your own body temperature. Preemies of my girls' size cannot create their own body heat so their beds have been creating and measuring their body temperature since day one. Now, at nearly 34 weeks they are getting better at maintaining their own temp and as result can enjoy wearing clothes. Well, they might not appreciate wearing anything but as their Momma, I sure do enjoy dressing them.
  • I have been able to hold them both twice this week, Monday and Tuesday. I can not begin to express in words how I felt with both of the girls in my arms. I was filled with such an enormous feeling of love, blessing, and joy. I cried tears of joy holding them both in my arms.

Prayer requests:
  • Continued lung growth and development
  • Wisdom for the doctors and nurses taking care of the girls
  • A strong nursing/sucking instinct and strength for the girls, we are very close to the bottle and breastfeeding milestone
  • Insight and knowledge for me their Mom as I advocate and challenge decisions made by their care staff
  • Comfort, patience, and mental strength for my older children and husband back home.

Thank you dear friends for all of your support, prayers, and words of encouragement. My girls and I are blessed because of your love.