Monday, March 28, 2011

Back Together Again

Holding both of my girls at the same time has been a prayer on my mind and my heart since the moment they were born nearly 7 weeks ago. Today my prayer was answered! What a day full of blessing, love and appreciation. This magical moment would not have been possible had it not been for an 
AMAZING day nurse that God has put in our lives. 

Monday, March 21, 2011

Extubation Day for Britian

Britian was extubated today and put on CPAP. Because she did not fully wean off of the conventional ventilator she was put on moderately high CPAP settings. She is so far doing wonderfully though and her oxygen requirement levels are very low. Being intubated for the past 6 weeks has clearly not affected her trachea, she has already found her crying voice. I am getting a dose of what life is like with twins today with both girls crying and carrying on at the same time. It is such a sweet sound though to hear Britian's cry and man is it a strong one!

Sunday, March 20, 2011

Britian has Graduated

Lots of changes happened this weekend in my absence, some good others not so good.

First the good news, Britian was taken off of the high frequency jet vent and put on a conventional jet. She tolerated the change very well which earned her a graduation ticket. Saturday afternoon I got the call that she had become Jillian's newest neighbor. I was so excited! With the girls so far apart for the past 2 weeks, I haven't been able to spend as much time with them both. This week will be so much easier because I can see them both at once again just like before.

The good news of Britian graduating out of ay 1 was tempered with the news that Jillian was put back on CPAP. Her breathing was becoming too labored so the decision was made to take her off of high flow and put her back on CPAP. I had noticed a change in her breathing on Friday before I left so this news was not totally unexpected but a bummer and a set back none the less. I know she just needs time to grow and get stronger so this set back isn't nearly as emotionally draining or frustrating as others in the past.

The highs and lows of the NICU roller coaster are definitely smoothing out. The lows aren't so low and the highs aren't so high.

I do have to say though that I caused a bit of a wave here in bay 2 when I returned for my weekend visit to see my husband and older children. I will spare you the boring details but suffice to say heads rolled a bit when I came in and started asking questions. I am far from a typical NICU parent. Not only do I have a biology background and understand the lab result values when they are spewed at a fast rate every morning during rounds and after every blood test. I am also here ALL week. Surprisingly this alone makes me an anomaly. Most parents understandably only come in the evenings or at other random and limited times. A list of things were changed with the girls' care this weekend without my knowledge. When I started asking specific why questions and not accepting their "generalized" responses the "higher ups" were called to answer my concerns. Other parents might accept the general answers without questions why, but I am not one of those parents.

I hope all of you have a great week and please continue to pray for my girls and their health and also for my wisdom and patience as their Mother and an integral part of their care team.

To my fellow 2011 May Moms of Multiples, keep those babies cooking. 

Friday, March 18, 2011

Big News for Britian

Britian stretching out while she sleeps on St. Patty's Day
Big events and developments are on the horizon for our little sweet pea, Britian. Doctor rounds this morning were very encouraging.

The neonatologist that is taking care of Britian for the next 2 weeks is a leading expert in his field and the local "guru" on ventilators and lung issues. He is jumping in with both feet and making things happen for Britian, I am very excited. He plans on putting her on a conventional ventilator tomorrow and possibly extubating her soon after that if she does well on the conventional vent. Both changes will allow her to graduate out of bay 1 and become Jillian's newest neighbor. I can not express in words how excited I am at this possibility. My Momma's heart is leaping and overflowing with joy. I am beyond ready for my girls to be together again.

So if you think of my girls this weekend can you please say a little prayer for them both. My biggest prayer this weekend will be that Britian is successful on the new ventilator and does well coming off of her nitric oxide (she can't move to bay 2 on NO). I will also be praying that Jillian continues to do well on her high flow oxygen. The girls are older now so they are required to saturate their blood with oxygen at higher levels. I knew this would increase their oxygen level infusion levels, but I just pray that Jillian can handle these higher levels well and it doesn't tax her little body or freak the doctors and nurses out to the point of changing her high flow (doctors and nurses that don't know her well might see this as a sign of concern but it is normal for my little peanut).

Have a wonderful weekend friends!!

Tuesday, March 15, 2011

Quick update for week #5

Jillian's first bubble bath
Two days into this week and we have already had quite a few milestones, improvements, and blessings. Before the week got away from me I wanted to update all of you on what is happening with the girls so far and in the near future.

Monday morning I woke up much earlier than normal. At first I was less than happy about that because I've been struggling with exhaustion and really just wanted to sleep. But I succumb to the fact that going back to sleep just wasn't going to happen so I got up and got ready for the day. The picture of Jillian and I happily shows you all the wonderful blessing that awaited me in her room when I walked in Monday morning. Had I not woke up early I would have missed her first bubble bath. Thank you Heavenly Father for waking me up early so I could experience this joy with my little peanut!!

Jillian got extubated this afternoon and is so far doing very well. I know that she could tire at any time and end up back on the ventilator. Mentally I know this, emotionally though is a whole other story. If she goes back on the vent I will most likely be an emotional mess but I will recover once my tantrum is over. She is a fighter though and I know she will continue to make progress and show everyone here how strong she is and how much she wants to go home. Jillian is currently doing very well on her continuous positive air pressure (CPAP). She is at low oxygen settings and breathing all on her own. She has such a tiny nose though and is very uncomfortable with a huge tube down her nose. I got to hold her for a nice long time this afternoon to comfort her and rock her to sleep. I am going to push for an alternative oxygen delivering method (known as high flow) tomorrow. The high flow will not require a tube down her nose and can deliver oxygen pressures equivalent to the CPAP, I think it will make her more comfortable. Seeing her cry and in pain is very difficult. I can't just pick her up and comfort her like I would if we were at home.

Both girls got their eye exams today. I haven't heard what Britian's results are yet. However, Jillian's came back normal. What a blessing! They will recheck her eyes again in about a month. Her eyes still have more developing to do which is normal for her gestational age so they will check again later to make sure everything has developed the way it should.

Jillian also got another echo yesterday to check if her PDA had reopened. Thankfully it has not and her heart shows no other signs of concern.

Thank you again for all of your prayers and words of support. Our prayers are being answered! The girls are growing and making wonderful progress considering their rough start.

In the near future Britian may also be extubated. She is on very low vent settings and her lungs have improved markedly from 2 weeks ago. If she is extubated and successful I think that will qualify her to be "next out" and she will get to move next to Jillian, although one of Jillian's neighbors will have to get the boot first.

Both girls are 15" long. Britian weighs 3lbs 3oz and Jillian is 2lbs 6oz. Both are up a pound from their birth weight.

Sunday, March 13, 2011

Prayer Requests for Week #5

Daddy holding Jillian for the first time
Wednesday will mark 5 weeks here in the NICU and Friday the girls will be 32 weeks gestational age. Last week I had a calm feeling when the week began, I wish I would say the same for this week. My motherly instinct tells me this will be a week of ups and downs. I am definitely not starting this week with the same sense of calm that existed last week. I would like to ask for your prayers of comfort and healing for this week. The girls are both on the cusp of making great leaps in their healing but with that always comes the uncertainty that additional setbacks could be looming.

Weighing heavy on my heart and mind this week will be Jillian's extubation. She will most likely be extubated (taken off of her ventilator and put on CPAP) Tuesday afternoon. She is going to be given a steroid before and after extubation to give her the best fighting chance of being successful on CPAP as possible. As with everything here in the NICU there are possible side effects and long term complications, I am praying that the benefits for Jillian far outweigh any possible complications.

Additionally, both girls will be getting their eyes checked this week. It is standard procedure here in the NICU for babies to get a ROP exam at or after 31 weeks. The girls were 31 weeks this past Friday so the time has come for their eyes to be checked. Having the girls wear glasses is not a concern, that is something I can certainly deal with. However, I am praying that there isn't something more complicated with their eyes that glasses can not fix.

On a happy note, my husband got to hold Jillian for the first time earlier this afternoon. At 2lbs 6oz, she looked so teeny tiny in his arms. They enjoyed their hour of cuddle time together though and I know that is an hour that my husband will always hold dear in his heart.

Friday, March 11, 2011

3lbs and Full Feeds

The girls have both had awesome weeks. After the events of last week, I certainly needed a nice and smooth week. Both girls have been growing very nicely and today Britian officially graduated to the 3lb club; she is 3lbs 1oz. Jillian is putting on the weight too as she is now 2lbs 6oz. Another wonderful milestone is that Jillian is getting all of her nutrition and fluids from me, her Momma. She has been tolerating her feedings so well and is now at a high enough volume of milk everyday that she no longer needs IV fluids or nutrition. I am so excited for her! Now I need to kick my milk production into high gear to keep up with her and Britian who is hot on her tail of getting to full feeds. The impact of breastfeeding twins has hit me today. If I think about it too long, the sheer impact of the amount of milk my girls will require is overwhelming, so I don't think about it too long. :) I have faith that my body will provide them everything they need even if it means I have to pump every 1-2 hours for them. Lastly, because Jillian is on full feeds she gets to have her PIC line taken out which means one less tube coming off of her little body which will be so nice. The PIC line is the line that she gets her nutrition from and it runs from the bottom of her leg up into her abdomen. As with any other line inserted into her body there is a chance for infection so getting this line out as soon as possible is important.

Overall it has been a great week and I already know that next week will bring more changes and challenges. Hint: Jillian will get to test her lungs early next week off of the ventilator.

Wednesday, March 9, 2011

Happy 1 Month Birthday Sweet Pea & Peanut

One month ago, as I sit here in the relative silence of the NICU my world was in a whirlwind of chaos, emotions, and uncertainty. I was being prepped for emergency surgery when I had only gone to the hospital to make sure my babies were ok. I just wanted to see heartbeats, just wanted to see them moving, I got a whole lot more than I bargained for. One month ago I got on an emotional roller coaster that I can't seem to find a way off of, nor do I want to at this point. I have had so many amazing moments with my two girls in the past 4 weeks. Yes I have shed more tears and felt more frustration in those same 4 weeks but all of that pales in comparison to the love, joy, and blessings that I have been showered with in the past month. My girls have both grown by leaps and bounds since their very early arrival into this world. What were once tiny translucent little things are now much bigger, healthier, longer, and feistier little peanuts.

I have been able to watch their personalities emerge and develop over the past month. Despite being identical twins I have a feeling I have two very different little girls. Britian is my laid back little girl, she goes with the flow, doesn't get too excited about anything, and is content to lay in her bed calmly. Her little sister Jillian on the other hand is already a handful. Her arms and legs are always kicking, pulling, or pushing on something. She gets angry when anyone messes with her and makes her desires known despite not being able to make a single peep. She has the brightest and biggest brown eyes which she will gladly show you many times a day. Britian enjoys her sleep while Jillian has long periods of being awake throughout the day and fights going back to sleep like no other baby I've ever had. If identical twins could take on personality traits from their mother and father mine have both certainly done just that. If I had to make a guess so early in their lives, Jillian will be more like my side of the family and give her big brother a run for his money while Britian seems to be more like her Daddy's side, quiet early on in life but once the attitude is unleashed watch out world. Or perhaps God just gave me a feisty one but spared me the heartache of two, he knew I would need a reprieve so he blessed me with calm little Ms. Britian. Only time will tell and I will gladly take everything He has planned for my life which amazingly now includes 2 precious, beautiful, and blessed little girls.

I am a Mom of one month of twins!! Can I sing it from the roof tops? I am so excited!!

Monday, March 7, 2011

Kangaroo everyday? Yes please!

As I mentioned yesterday, Jillian is now in a lower level room within the hospital's level 3 NICU. The mission and long-term goal of this new area is growth and development. As a part of this capacity parental involvement is highly encouraged and facilitated. Much to my excitement I found out this morning that kangaroo care is allowed everyday, just this little piece of info made my Momma heart leap.

And as a quick side note, I now have two 2 pounders. Little Ms. Peanut has officially graduated out of the 1lb weight category. YEAH! Weights on record for today are: Jililan 2lbs 3oz (980g) and Britian is 2lbs 13oz (1295g). Jillian is nearly at full feeds so she should really start putting on the weight now. Full feeds means that she will no longer require additional nutrition through a line in her leg. When she reaches full feeds (she is only 2oz away from this milestone) they will be able to remove the line in her leg which poses an infection risk just like every other tube and line in her body. Removing this line is also one more step closer to going home.

Sunday, March 6, 2011

Graduation Day for Jillian

All dressed up for graduation day!
Today was graduation day for my little peanut, yeah! Jillian has officially graduated from the level 3 NICU to the level 2 NICU. As I mentioned in the previous post, she was classified as "first out" because she was the healthiest baby among the 11 other babies in the level 3 bay. When I returned to the hospital this afternoon after spending the weekend with the rest of my family at home I got word that Jillian would be moving before the night shift change.

The move is bitter sweet because her big sister is still in bay 1 but she has been stable the past couple of days so there is hope that Britian will be joining her little sister in a couple of weeks so long as she continues improving. Britian will need to wean to a conventional ventilator and prove herself stable on that vent before she is considered for graduation. We have her room all ready and waiting for her though because we have been given a twin room from the get go, such a blessing. Because I know we will be here for quite a while I am going to being decorating the girls' rooms with pictures and other "pretty" things I come across.

Who would have thought that the little girl who fought so hard to survive those first few days would graduate before her bigger sister? Certainly not me!! But I am so proud of Jillian and am looking forward to continued growth and improvements from both girls.

As an added bonus on Jillian's graduation day, I got to kangaroo hold her for over an hour before she moved. Yummy! She is such a snuggle bug peanut, holding her this evening was a great way to start what I hope is an awesome week.

Thank you everyone for your continued prayers, they are being answered, there is no denying that!!

Saturday, March 5, 2011

Jillian is Classified as "first out"

Jillian and her signature long fingers.
Everyone who meets my girls says that they will be
piano players. Only time will tell!
Jillian Elaine Marie;
1. no heartbeat for 20 minutes after birth
2. CPR for 45 minutes after birth
3. 9 hours after being born "crashed"so badly that no one on her medical team thought she would live more than a few more hours

3 weeks later she is the healthiest baby among the 11 other babies in her level 3 NICU. Who would have ever thought? Most certainly NOT me!

Because she is the healthiest baby in her NICU she is now classified as "first out". First out in NICU terms means that she will be the first one moved out of the the level 3 NICU to a lower level NICU when a new baby needs to be admitted to the upper level NICU. Currently the nurse to patient ratio is 1:2. When Jillian (and eventually Britian) gets moved the ratio will jump to 1:4. Theoretically this will be fine but this Momma bear is still nervous about the higher nurse to patient ratio. As it stands now the girls are neighbors and I can walk freely between the two rooms. Until they both graduate to the lower level NICU I will be getting plenty of walking in traveling between their rooms. Thankfully, once both girls are moved to the same NICU bay they will be able to be in a "twin" room. What that means right now I have no idea, I haven't been able to take a tour of the lower level NICU other than just walking by it on my way to the breast milk freezer. I would envision the twin room to be something similar to the arrangement we are in now; 2 independent rooms that can be opened up and joined to make one bigger room. So I am happy that eventually they will be neighbors again, how soon that will be I have no idea. Britian needs to get the memo and heal those lungs.

I've had a great few days here at home with my older children and husband. Tomorrow it will be time to head back to the hospital and be with the girls. I miss them so much! My prayer for this coming week, the week in which the girls will celebrate their 1 month birthday, is for Britian's physical healing and for my emotional well being. Emotionally I was a complete and absolute sobbing wreck this week. Britian and I both need a level of strength and healing that can and will only come from our Heavenly Father.

Wednesday, March 2, 2011

A Beautiful Blessing: Kangaroo Holding

I got to kangaroo care hold Jillian tonight for the very first time. Words can not describe the sheer joy  and feeling of being blessed that filled my heart as I snuggled close to my baby girl. 1lb 12oz felt like a feather in my arms. Sweet Jillian fell fast asleep in my arms and did wonderfully while I was holding her. Her night nurse warned me that her oxygen levels might go up while I am holding her which is a sign of stress but my sweet girl who is stronger than she looks, tolerated the holding incredibly well and actually went down in her oxygen requirements while I was holding her. Great job Jillian!!
My Beautiful Jillian

A mother's joy

1lb 12oz feels like a feather in my arms

Wide eyed and happy after being held by her Mommy

Thank you Heavenly Father for this amazing blessing today! You knew what my heart needed after an incredibly emotionally rough day (and week) with Britian.

Tuesday, March 1, 2011

"See If the Dr. Wants to Bag Her"

Rough day for Britian, such a rough day.

This morning she had a de-sat (low blood oxygen level) and tachycardia (high heart rate) spell. Then this evening she had another de-sat and bradycardia (low heart rate) spell. Spells are bad plain and simple. It is so important in fact that NICU babies not have spells that one of the requirements for discharge is no spells within 7 days. Obviously we are far from being discharged so this requirement is the farthest thing from my mind. However, spells still shake me to my core and scare me to death.

When a spell starts the girls' nurse calls for another nurse's help and says "She is having a spell, she if the Dr. wants to bag her." ARGH! I hate those words! Witnessing one of my girls have a spell feels like I am watching them possibly pass away. Yes, these spells can be that serious!

In Britian's case no one is quite sure why she had 2 spells today. The thinking is that her ET tube got moved and was pressed up against her trachea. Her xrays showed that her ET tube is in a good location but that doesn't mean it hadn't moved earlier. She has been otherwise so stable (except for her P.I.E. episode) so I am having a hard time believing that something is wrong with her and is causing her spells. But only time will tell I suppose. All I can do is pray and pray very hard for my big girl.

I hear too often how the bigger twin in twin-to-twin transfusion can do well after birth but then begin to crash and have one issue after another. Oh how this makes my heart ache more than words can ever describe. As I wrote in my journal this evening, my girls are twins and they HAVE to stay that way. Of course I know all of this is out of my control and instead is in His hands. All I can do at this point in our journey is be there for my girls and pray, pray without ceasing.

The Girls' First Preemie Outfits

A dear friend of mine sent the girls their first preemie outfits today. 
So of course we had to have a dress-up session this afternoon.

My little peanut Jillian

"Mom, you woke me up!"

Beautiful Britian

Both girls have a ton of black hair.
I hope it stays!