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.