The "NICU Mom" look

For the past 2 weeks or so I have been one of a very few Moms in the level 3 NICU here at the hospital. For whatever reason or personal circumstance the majority of the other babies in our part of the NICU do not get regular family visitors. Keep in mind there are only 12 rooms total in the level 3 area and my girls occupy 2 of those 12 rooms.

Today however was different. As I went about caring for the girls today and doing some of my other regular chores I noticed quite a few new Moms walking through our hallway. There were quite a few new admissions late last week so seeing new Moms come visit isn't too terribly surprising. As I glanced at a few of the Moms who had been visiting for a few hours late into the night the "NICU Mom" look hit me. I mentioned it to the girls' night nurse and she agreed. There is a distinct NICU Mom look. It is a look of exhaustion, stress, worry, confusion, new reality, and overwhelming fear all wrapped up into a ball. Faces are pale and eyes droop from little sleep. Brows are furrowed from the stress and worry.

However, as I was walking back to my room here in the hospital for the night I passed by the pediatric inpatient unit. This is the area of the hospital where children are staying for one reason or another, it isn't the PICU but another area that cares for children needing inpatient care. As I walked by this unit another Mother was exiting, she too had "the look". So I stand corrected, the look that I wore in those first few days and might still wear now from time to time isn't specific to the NICU. The look that we wear might be better coined as "the hospital Mom" look. No matter how little or how big, regardless of the situation your child is facing, having a child admitted in a hospital is a stressful time in our lives and we wear it across our face.

The girls' night nurse mentioned in passing that the look doesn't stay forever. Once the Moms find their routine then the look diminishes enough so that we look reasonably normal. I wonder if I have lost the look yet, I am certainly in a routine. No matter, what matters is that we are taking it one day at a time, sometimes one hour at a time.

Week #2 Update

Jillian modeling her preemie hat and booties
Made lovingly by a Preemie Project Volunteer

Last week was incredibly emotional, which I wrote a bit about previously. Thankfully the invasive and aggressive measures that the medical staff here in the NICU took for Britian's lungs have helped. Over the weekend her P.I.E. healed and her lungs are better expanded. Sunday she also self-weaned on her oxygen levels. Since the P.I.E. episode began her oxygen levels on the jet vent had been upwards of 70% (room air is only 21%). However, Sunday she started getting high blood oxygen saturation levels and the nurses were able to bring her oxygen levels down to 40% or so which is great considering she was still paralyzed and sedated. Sunday they also took Britian off of her paralysis medication, by Sunday evening late she began moving just a bit and taking sporadic breaths on her own. This morning (Monday) she is moving much more, opening her eyes and flinching in response to touch. Once they remove the sedation medications (complete weaning by Wednesday) she should start to return to her normal self again, kicking and moving her arms all over the place. Oh what a beautiful day that will be!! I miss seeing her legs stretch up high in the air and her arms and hands move around her face. I am just so thankful that her lungs have healed so nicely since late last week. I prayed non-stop since this episode started that God would hold her and heal her, my prayers have been answered (along with all of your prayers if you have been praying for my girls). Praise Him!! Hopefully now she will recover for the sedation quickly and easily and move forward with her growth and progress.

Jillian had a great week! She has continued to stay stable on her jet vent and is now at such low settings on this vent that she has no room for improvement. The next step for her will either be a conventional vent or extubation to a CPAP. I really don't think she is ready for the CPAP. She is still so tiny, still less than 2 pounds, and considering her rough start in life I truly believe that her lungs need to mature and develop more before she can be successful on the CPAP. The goal here of course is to cause her the less amount of stress possible. If she fails on the CPAP she will have to endure being intubated again. Jillian is tolerating her breastmilk feedings very well and is up to 24cc's every 24 hours. We are waiting for that critical point where her breastmilk calories can be high enough so that she really starts putting on the weight and growing. 

Both pictures in this post are of Jillian. She got to have her first modeling session yesterday afternoon. She wore her knitted hat and booties from The Preemie Project. Jillian first wore her hat on the day she was born, at that time she was swimming in it. Now I fear this will be the last time she can fit in it, that hat was just a tad snug on her little head yesterday. I sure hope Britian fits in her hat and bootie set for her modeling session.  The girls' day nurse yesterday was able to make scrapbook pages for each of them. Jillian's is hanging on the door of her room and Britian's is made up but just waiting for pictures to be taken. Because of the sedation Britian is a bit swollen and retaining fluids. We are going to wait for her swelling to subside before we take the pictures for her scrapbook page spread.

Please continue praying for my sweet babies. I can attest to the fact that your prayers are being answered. I know we will be here for months but every step in the right direction is a step closer to being home and completing our family.

Chronic Lung Disease: Educating and Preparing

Chronic Lung Disease (CLD) is a scary term. CLD is a term that has cropped up quite a few times in my personal vocabulary during these last 2 weeks here in the NICU. The doctors taking care of the girls have never mentioned it but I have asked anyway knowing all too well that doctors keep a boat load of information to themselves until the very last minute. I prefer to be prepared and educated for any and all possible complications from my girls' early arrival into this world. Considering their lung issues and recent bouts with P.I.E I am beginning to suspect that dealing with CLD as an after effect is a real and likely possibility.


So what is Chronic Lung Disease and what are it's causes?
Simply put CLD is a very general term describing long term respiration issues in premature babies. CLD is the result of damaged lung tissue most often from ventilator use. Damage to lung tissue can cause scarring which in turn makes breathing difficult and increases a babies need for oxygen. In addition to ventilator and oxygen use, premature lungs and low levels of surfactant (a substance in the lungs that help the air sacs open) can cause CLD. 


Who is most affected by CLD?

1. birth at less than 30 weeks gestation
2. birth weight less than 1,000 (less than 2 pounds) to 1,500 grams (3 pounds 5 ounces)
3. hyaline membrane disease - lung disease of prematurity due to lack of surfactant that does not show the usual improvement by the third or fourth day.
4. pulmonary interstitial emphysema (PIE) - a problem in which air leaks out of the airways into the spaces between the small air sacs of the lungs.
5. patent ductus arteriosus (PDA) - a connection between the blood vessels of the heart and lungs that does not close as it should after birth.
6. premature Caucasian, male babies are at greater risk for developing BPD
7. maternal womb infection (chorioamnionitis)
8. a family history of asthma
9. breathing problems at birth
10. develop an infection during or shortly after birth

In my girls' cases they have 7 of the 10 causal factors, the first 5 in the above list. As a result I am educating and mentally preparing myself for the highly likely chance that CLD will be one of the challenges we will face with these girls once we leave the NICU and return to the real world. What CLD will look like for us in the real world is still a mystery but I know we will get through it and persevere. This is just another reason why I am thankful we homeschool. Keeping my older kids at home and away from the germs spread so rampantly through public schools will ultimately help protect my twins from CLD complications and lung infections.

Watch Me Grow Part #1 0 - 2 weeks

Britian @ 2 weeks

Britian day 1

Jillian @ 2 weeks

Jillian Day 1

Every Friday is a Milestone

If I was still pregnant I would be taking a belly picture today to add to my collection. But I am not, so I won't. Instead here I sit in the NICU celebrating the fact that I now have 29 week old twins, day of life 16. 29 weeks is a big milestone in the NICU world and even bigger yet because my girls are 2 weeks old which in and itself is another milestone. At 29 weeks we can begin considering and planning for cradle holding time with Mommy, yep that's me. I am hopeful that this can happen early next week if not this weekend when my family and I return to visit the girls. I have been anticipating getting to hold the girls for such a long time, I know I will be a bucket of tears with overflowing emotions when I first get to hold them in my arms.

If you have never had a preemie or a baby in the NICU you have most likely never given a second thought to the privilege you have of holding, kissing, snuggling with, and loving on your precious baby. Every fiber of me cries out to hold, caress, and kiss on my two sweet girls, but I can't. Rather I can only gently place my hand on their body, no caressing because it can irritate their tender skin. I can not kiss my girls on their head or snuggle up close to their beautiful black hair because of germs. I am left holding them in my arms suspended in the air away from my body during the rare chance that I am here for a bed linen change. I have never felt their warm body against my face or snuggled them close to my chest. Not yet, but I know the day will come, hopefully one day soon.

In my new reality every Wednesday and Friday are days to celebrate. Wednesdays are the day they were born way too early and Fridays mark a new gestational week for my sweet girls.

Update on the Girls

Jillian on her tummy for the first time

First, I want to extend a heartfelt thank you to everyone who prayed for Britian yesterday. I can attest firsthand to the fact that our prayers are being answered and that our Heavenly Father is holding them both in His right hand and healing their little bodies.

When I arrived at the NICU this morning their Dr. told me that Britian's morning x-ray was clear; her P.I.E. had resolved overnight. This is wonderful news but we are not totally in the clear. She will be sedated and paralyzed for the same number of days that she had the P.I.E. which in Britian's case means she won't be weaned from her sedation and paralysis meds until Sunday morning. This is of course assuming that it doesn't return and other issues do not pop up with her lungs in the meantime.  It is so hard seeing my sweet baby paralyzed, trapped within her own body. I know she can't feel anything and is unaware of her comatose state but it is still tough. I want so badly to see her kicking her legs, grabbing my finger with hers, and stretching her chin out like only my kids can do. Very soon though I know, very soon.

Jillian has been having a great week. Nothing at all to report on her other than a possible room change. While this sounds promising and encouraging just the thought causes me pain. I want my girls to remain next door neighbors. The lower level NICU that Jillian could be moved to any day now is down the hall and around many corners. I will no longer be able to walk between their rooms or watch over one while I care for the other. I would love if they could move together to the lower level NICU but considering Britian's recent bout with P.I.E. I know that possibility is a pipe dream. Please continue to pray for Jillian, she has not put on any weight in 4 days. Also pray that while in the lower level NICU God will hand pick the best nurses to care for her and watch over her especially during the times that I can not be at her bedside. There is a higher nurse to patient ratio in the lower level NICU and this causes me some concern. I worry that her nurse will be occupied with another patient while she is in distress and no one will be there to come to her aid. Neurotic I know, but it is a Mom worry I have. I asked her Dr. to try and hold off until at least next week when I am here, of course he couldn't make any promises but said he would do his best to keep her here and move other patients before he moved Jillian. Who would have ever thought that 2 weeks ago the baby on her death bed would be moved before her otherwise healthier and stronger big sister? Certainly not me.

Pulmonary Interstitial Emphysema saga continues

Britian's Pulmonary Interstitial Emphysema (P.I.E.) did not improve overnight. So first thing this morning when I arrived at the NICU I got the news that they were going to be doing some aggressive therapy to try and heal her lungs. The only things I really heard were sedation, paralysis, and morphine. All of these steps were taken to stop her from breathing on her own so that the high frequency ventilator could do all the work for her. They also want her lungs to collapse a little so that the P.I.E. can hopefully heal itself. Britian will be like this for the next 24-48 hours.


The pain of seeing your baby girl paralyzed is indescribably painful. I held her hand and caressed her feet up until the time she was paralyzed. I stared at her intent on remembering and savoring every moment of her beautiful limbs kicking and moving around. Now she lays limp and unmoving, hopefully resting and healing.


As I pen this saga they are yet again making more changes to my sweet girls' situation. She is also now on Nitric Oxide (NO). NO in this situation is used as a medication to help move the oxygen in her blood to the healthy and open parts of her lungs. They also added a bronchodilator to help open her bronchial tubes. This is of course all in addition to frequent chest xrays and heel pricks to get blood gas and blood pH levels.


To say that this has been a hectic day so far is an understatement. Only recently have I been able to calm down and regain my composure, enough composure at least to speak in a normal voice. Up until about an hour ago I was weeping, quiet, and removed. I had had enough of the business of Britian's room so I retreated to Jillian's bedside to be with her, sing to her, and watch her non-paralyzed body move. I love all the expressions my girls make, it is so painful to not see these from Britian today. But I am holding on to prayer, my faith, and hope that all of these interventions will work in her favor and she can come off of sedation very soon.

Pulmonary Interstitial Emphysema

This is a repost from my Shepherding Kind Hearts blog

Pulmonary Interstitial Emphysema, better known in the NICU as P.I.E. What is P.I.E. and why am I posting about it? First things first.


What is PIE?

Pulmonary interstitial emphysema (PIE) is a collection of gases outside of the normal air passages and inside the connective tissue of the peribronchovascular sheaths, interlobular septa, and visceral pleura secondary to alveolar and terminal bronchiolar rupture. Pulmonary interstitial emphysema is more frequent in premature infants who require mechanical ventilation for severe lung disease. Once pulmonary interstitial emphysema is diagnosed, intensive respiratory management is required to reduce mortality and morbidity.

Reference: http://emedicine.medscape.com/article/976801-overview, accessed on 2/22/11

Why am I posting about it?

My girls are struggling with PIE. Today Britian has developed PIE in both lobes of her lungs. Yesterday, Jillian had it in her right lung. Britian's has developed suddenly and has progressively gotten worse throughout today. Her Dr.'s are changing the settings on her high frequency jet vent, adding base to her fluids which should help with oxygen saturation, and waiting. We are all waiting, waiting and praying. Mortality and morbidity, those are two terms I can go without ever considering when thinking about my children. But alas, there it is, in black and white, PIE increases mortality and morbidity. Shoot an arrow straight through my heart, emotionally this is a tough one.

No one can tell me why she has developed PIE in both lungs so suddenly. Perhaps it is simply her severe prematurity or maybe the stress from this previous weekend has caught up with her. On Saturday Britian's breathing tube was changed because of an air leak. While changing the breathing tube Dr. Dagle tried her on the CPAP. Britian failed very quickly on the CPAP and the resulting lung issues have been a downward spiral. One of her lungs collapsed Saturday following the CPAP attempt, she was upgraded from the conventional ventilator to the high frequency jet vent, and is now battling PIE in both lobes. All steps in the WRONG direction.

There is a saying the NICU community; the first week is the "honeymoon" period. The girls and I are clearly out of the honeymoon. Physically they are struggling and fighting harder; emotionally I am falling and crashing harder. Before you go and post a comment on faith and hope or on how God is there for me. I know all of this, I truly do. But I am human, it is normal for me to struggle and fall to my knees in prayer.

A New Blog Purpose

When I started this blog for my girls they were both safely tucked away in my belly and growing strong. I had high hopes, dreams, and aspirations for that pregnancy and for their well being. My mind was consumed with thoughts of carrying them to term, beautifully delivering full-term twins, and whisking them home all dressed in matching outfits and marching on with our lives, my new family of 7.

This is certainly a case of dreams clashing violently with reality. The reality I now face with my girls is overwhelming at times. But I try not to focus on the future, the here and now is more than enough to emotionally handle from day to day.

Because of the long road ahead I am going to use this blog as the primary means of communicating, writing, updating, and venting about Britian and Jillian's journey. 

A Rough Weekend but Still Some Good News

Jillian with both eyes open, also telling everyone she is #1

I went home for the weekend to get clean clothes and spend time with the rest of my family. It was a nice couple of days with them but back here in the hospital my girls struggled. Both girls had a lung collapse due to different circumstances. Britian tried the CPAP and failed immediately, I knew she wasn't ready. But through that process she ended up with a new breathing tube which will not allow for the air escape she was experiencing. Why is this important? An air leak around the breathing tube is basically letting all the air from the vent escape out of her lungs without being effective in expanding her lungs. So hopefully now her lungs will be able to get stronger and next time we try the CPAP she will tolerate it a little better. Thankfully, both girls' lungs are healed and reinflated today. They are both on the high frequency jet ventilator to help with their expansion and air pockets that were forming in their lungs. Both girls are tolerating the jet vent well.

Also over the weekend both girls opened both eyes. When I left Friday afternoon, Britian had her right eye open and Jillian had her left eye open. Now both eyes are open on each girl. The picture in this post is Jillian. Britian is on the photo therapy lights for high bilirubin so I can not get a picture of her with both eyes open but you know I will as soon as those lights are turned off and her mask is removed.

Britian hit a big milestone today, she is over the 2lb mark. She is 2lbs 0.5oz to be exact. In the micro-preemie world this is a huge accomplishment.

I am praying for a great week with the girls. And I am also praying that my 3 kids at home have a good week with their care takers. My Mom and Aunt are graciously sharing babysitting duties this week. Despite my absence the kids will be returning to their homeschool routine, hopefully they adjust well and do not give Grandma or my Aunt a hard time about doing their schoolwork.

Here is to another week in the NICU. . . 

NICU Mom Worries

The list of NICU Mom worries is limitless. Everyday is something different, no two days are the same. You worry about weight gain, heart rates, respiration rates, exam results, blood test results, feedings, progress, and most of all the UNKNOWN. The unknown has to be the hardest of them all. Like all Moms we worry about the well-being and health of our children. A healthy life is almost a given when you give birth full-term but when you have a preemie everything is thrown out the window and instead every quality of life concern floods in. 


Thoughts that have flooded my mind in the last 8 days include:
Will my girls have normal and healthy lives?
Will my girls have normal vision?
Will my girls have special needs including walking, learning, and developmental?
Will my girls struggle with weight gain once they are discharged?
How will their early arrival into this world affect their overall well being and development?


The answers to these questions are almost as limitless as my list of worries. The hard part is that these questions won't be answered for a very long time which leaves me waiting and wondering, stressing and pondering.


During my times of worry though I am comforted by the simple knowledge that our Heavenly Father will get us through each and every hurdle that lay in front of us. A dear friend of mine sent me Romans 15:13 today; May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. 


What a powerful verse to get me through these tough times. My trust in Him truly does fill me with hope and peace. Something that all NICU Moms need on a daily basis, sometimes even just minute to minute.

A praise after my vent

Other than the admissions department, I am quickly coming to realize that being here at the University of Iowa hospital system is a HUGE blessing that can honestly and truly have only been coordinated so perfectly by my Heavenly Father. His perfect plan for my family and the girls' life is nothing short of amazing and awe inspiring. The level of care that not only I received while a patient here but the continued level of expertise that will watch over and care for my precious babies is overwhelming. Not only do they have the best NICU doctors coordinating their care but the compassion and caring from their nurses is comforting to me as their Mother.

Not only are the nurses experts in their field but they all have a huge passion for their work and it shows. They realize that it is the little things in life as well. For example, offering to allow me to help with their basic care needs such as changing a diaper, wetting their mouth, or simply holding my baby during a bedding change. Eventhough they are here for the girls the NICU nurses here at UofI care for me as well. They make sure I am staying hydrated, have privacy to pump, and respect my need to be around my girls as much as possible. I simply can not say enough good things about the nurses and doctor staff here at the UofI NICU.

I was discharged today. My family, including my Aunt and Uncle came down to see the girls again as well as help me move out of my recovery room and into my new room at The Ronald McDonald house just a few blocks from the hospital. As my husband and children left to go home and the reality of my new situation hit me, emotionally I lost it. I've been down this NICU road (to a MUCH less degree) with my first born. I couldn't take the loneliness 6 years ago when I was discharged so after accepting a room at the hospital at the time, I called my husband to come and get me. I lived close enough to the hospital at that time to commute back and forth so being at home was an option then. Commuting is not an option now, I am 2 hours from my home and my family. My room at the Ronald McDonald house will take some getting used to. While I am there I feel caught between two worlds. Half of me wants to be home in small town Iowa and the other half of me wants to be at the hospital with my girls. My temporary home away from home will just be a place to rest my head at night and nourish my body. But I am in no way discounting the enormous blessing that my room at the Ronald McDonald house will be. I can't even imagine the expense we would incur if I had to rent a hotel room for my extended stay here in Iowa City.

Oh and in case you were wondering, yes my girls are absolutely and undeniably identical, even at this very young and tiny age.

A Personal Vent

To keep my sanity, I am going to vent a little here. Please keep this post and its contents to yourself.

Vent #1; admissions here at the University of Iowa needs to calm down. I have received no less than 4 phone calls within the 30 hours since the girls have been born. They keep pestering me about getting the girls added to our insurance. The woman that keeps calling me even admits that I have 30 days to add the girls, she know this and I already know this from my previous pregnancies. But seriously lady, where is your compassion and understanding? Everyone else from this hospital seems to have a healthy dose, where is yours? I have 30 days, so call me closer to that 30 days if they haven't already been added. Taking care of my girls, my other children, and myself are just a wee bit more important than dealing with insurance at this point.

Vent #2; this recovery is painful! Because I had an emergency c/s my incision is from my belly button all the way to below my hair line. Gravity is not helping me right now. The weight of my belly and organs along with the pressure associated with standing is trying to tear my incision apart. This coupled with the chest and head cold I've been battling, my pain is high most times. I am congested in my chest but I can't effectively cough to get it out because of the pain and the ripping sensation.

Like I said though, these are just petty vents to get these things off of my chest. My girls and their progress and development are first and foremost. I will heal and the insurance will be taken care of well before they ever get to come home.

Growth spurt?

For the past 3 days or so I have been incredibly uncomfortable, yes more so than normal. My belly has been non-stop rock hard and I've been having incredible back pain. As I rested this morning after getting out of the shower it occurred to me that the girls might be in a growth spurt, hence all the pain. I honestly can not sit without feeling like my belly skin is going to rip apart at any moment; such a lovely feeling. Yes I put plenty of lotion on my belly to keep it hydrated and and supple as possible. I also have a feeling that Baby A may have turned, not sure which direction but I think she may have moved from her previously transverse position. Just a theory of course at this point. "Something" is pressing on my left hip and unless it is her feet kicking me there she has to have rotated out of the transverse position. I really hope she moved head down, that would be such a blessing. Her new position would also explain the recent belly tightness; 2 babies laying vertical is going to take up more "outward" space in my belly than one laying sideways and one vertical. One more week until my next appointment!

When You Are Expecting Twins, Triplets, or Quads by Dr. Barbara Luke

When You Are Expecting Twins, Triplets, or Quads by Dr. Barbara Luke and Tamara Eberlein; I recently purchased this book because it came highly recommended by fellow Moms of multiples. I haven't read enough of it to do a review or provide my thorough opinion on the book. However, I have read enough to know that you have a friend or in the future have a friend who is expecting multiples please introduce her to this book as early in the pregnancy as possible. I wish I would have had this book months ago, well at least 6 weeks ago when we found out about the twins.

26 week belly picture

26 weeks!!

24 week ultrasound pictures

Here are a few of the ultrasound pictures from my 24 week appointment. Sorry they are late but the CD burner was not working the day of my appointment and it took me another 2 weeks to get back to my OB office to pick up the disc.

Baby girl B's profile

Baby B's foot of the left and her sister's head on the right

Baby girl A's profile

Baby girl B wit her hands crossed over her chest

26 weeks

It is Friday again, which means that another week with these twins safely cooking is behind me again. There was a point last night though that I thought I might not see this milestone with the girls still safely tucked away. From about 7pm to 9pm I had some pretty consistent and painful contractions, the last hour or so was coupled with pelvic floor pain and pressure. Thankfully after laying on my left side and drinking a ton of water they subsided. My husband has ordered me to stay off of my feet today, not even a bath this morning according to his orders (I took a bath last night and couldn't get out without his assistance). I will call my OB here in a little bit to see if she wants me to come in after last night's episode. If I have to go in, I will certainly keep you all updated.

And I want to thank my Aunt dearly for coming over a visit yesterday. I got to share with her some of the adorable clothes I have accumulated. My husband's eyes gloss over when I show him baby clothes so it was nice to share them with a fellow female that can appreciate their adorableness. :)

No one told me it would be this tough

No one ever told me that being pregnant with twins would be this tough. Perhaps this is just a phase and in a week or two I will feel fine again but right now I am physically, mentally, and emotionally exhausted from this pregnancy. My belly is sore. My heart burn is out of control. I can no longer lay down in my own bed let alone sleep in a semi-reclining position, otherwise I have gastric juices flowing the wrong way; up instead of down. My thighs now have their own zip code. The list goes on and on. I find it amazing how just adding one extra baby to a pregnancy can change the experience 180 degrees. Take everything you know or have experienced with singleton pregnancies and multiply it by a million then add in a whole lot of other things that just don't happen with singles and you can get a slight feel for what this adventure is like. Emotionally and physically there is no comparing the two types of pregnancies. I don't want to come across like I am complaining. I am truly not. Venting is probably a better word, simply getting my thoughts and feelings out there rather than keeping them cooped up in my own head. As I sit here on the couch unable to get comfortable, exhausted yet unable to sleep, I know that where I am now is a whole lot easier than where I will be in say, oh 13 weeks or so. Despite the discomfort, having the twins in my belly is a whole lot easier than what life will be like when they are out of my oven.

Now back to the dance party in my belly and the fire in my chest.