Monday, March 29, 2010

The Lord has done great things for us

This has been an emotional week. Miss Brynn has really taken off with the bottle feeding. This is very exciting, and very terrifying. That means soon, we'll be bringing that sweet girl home. I feel very comfortable taking care of her. I am ready to bring her home. At the same time, I am PANICKING!!! Surely I have forgotten some important piece of baby equipment, do we have enough blankets? I KNOW we have enough lysol and clorox wipes to fend off any germs. I realized today, it's not so much that I am going to miss the NICU, but I will miss being constantly surrounded by people who understand. You don't need to explain the intricacies of Suck-Swallow-Breathe to NICU mommies. We know. I'm going to miss watching the other babies grow... at least I can follow their blogs!

It was emotional in other ways, too. Baby Micah passed away this week. He was born at the same birth weight as Brynn. He had been in the NICU for over a month now. He was doing really well, even on to CPAP, but then an infection took his little life. The night that he went on, the NICU was very quiet. All of the parents were in tears. You can't help but think that could have been your little angel. It made the importance of keeping infection away that much more evident.

It was also a joyous week. Brynn is so fun. She smiles a lot, and she is learning to play with her tongue. She will remember it is there and stick it in and out for 15-20 minutes at a time. So Cute. I got to give her her first bath. While she was laying naked on her warmed blankets, she wrinkled her brow and looked at me like, "Mom, what in the world is going on?" even funnier was when the nurse started taking off her monitor leads. Her forehead got even more wrinkled and her eyes started darting back and forth. It was almost like she was telling us, "Do you guys know what you are doing?" I love getting to know her every day. I can't wait to get to know her at home!

Baby Spa

Happy Girl

100 Days in the NICU!

Sunday, March 21, 2010

Little Miss Personality

Brynn is getting to be so fun. She already has such a personality. She is 100% Diva Princess. She knows that when someone is feeding her that she doesn't want to, she can gag and they'll stop. When she's tired of eating, she'll go limp and close her eyes and you can't make her suck for the world. However, when you take the bottle away, she's wide-eyed and wants to play. Her nurse said the other day that she pulled her feeding tube out, so milk was going all in her bed. Her entire bed was covered, but she managed to not get one drop on her outfit. Diva.

Smiling for the camera

I'm too tired to finish my bottle.... *wink*

Monday, March 15, 2010

Good Work!

For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.

Philipians 1:6

Today was "look back and remember day." Several times throughout the day I was reminded to look back and remember where our journey started, and how far we've come. Isaac and I ran across a photo he took on the night of December 17. Little did we know that 12 short hours later, our lives would change forever. We looked at pictures of the next day and her little body was so tiny. Her arm was not as big around as Isaac's pinky in her first picture. Wow.

I think the moment that really struck me oddly enough was at TLC. They didn't have any serious topic to talk about tonight, but just scrapbooking night. There was a set of NICU stickers that had the words "jaundice" "PICC line" "bradycardia" "apnea" "tachycardia" "IV Fluids" "ventilator" I thought that was odd. What a different world we NICU people live in. But as a few of us started talking, we noticed that most babies had a PICC line, while my princess had a Broviac catheter. When the other moms described the purpose of a PICC line to me, it seemed like there was not a huge difference. So, we asked the nurse what the difference was. She immediately said, "There's a HUUUUGE difference" a PICC line is put in by the doctor, it goes in the babies arm and threads up through and sits right above their heart. It barely even leaves a tiny mark where it was. A Broviac has to be put in by a surgeon. The baby has to be sedated, they make a cut in her neck and put it in. It is for sicker babies that are going to need it for a long time."

I guess I never took time to think about that. Why did my baby have a broviac and others had PICC lines, and still others just a regular old IV. But once I did, it was mind-numbing. When I think about where we have come from with Brynn, I also think about where we are headed. She is definitely a gift from God. I love the verse in Philipians 1. I am confident that God began a good work in Brynn. You can see his finger prints all over her. He is going to perfect it until the day of Christ Jesus. I pray every day that she grows up and praises him for where he has brought her, and how far we've all come.

Thank you Jesus for sustaining my sweet girl's life. Thank you for the road you've brought us on, and for the plans you have for her life. I pray that every day she lives she brings glory to you!

Sunday, March 14, 2010

We are Family...

You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu

My sweet baby girl is almost 3 months old now. Can you believe it? She weighs over 5 pounds. I am so blessed. Keep her in your prayers this week, she's got an eye surgery for ROP on the horizon. I had the opportunity to spend yesterday with my Mom and sister, which inspired this post. I feel indebted to my family, but I will never be able to repay them. I am not sure how some people make it through the world with no close family. Very sad. They have been so accommodating, so caring, so selfless. I can never really talk on the phone any more, so they text and email. They came and stayed with me for days and weeks after my 4 hospital visits.

Mom especially has gotten the raw end of the deal. She stayed with me for 2 weeks through my C-Section, and subsequent hospital visits. She came and stayed after my gall bladder. While she was here she made dinner, cleaned house, and listed to me whine. Seriously, I am the worst sick person. Not only do I whine, but I generally seem to develop every type of complication that you can imagine. Ugh. She had to miss Christmas at home. After all of that, she's been working hard on our house that we're going to move in to. My mom rocks.

Nanny came down for Brynn's delivery also. There were hours and days that she sat at my bedside. She had to listen to me tell my ridiculous emotionless story to visitors over and over again. Then she had to tell me over and over again what had happened. She drives down here and visits us often. She works and works on our house. She texts and emails me daily to get updates, knowing that it is difficult for me to find time to talk on the phone. I am so glad Brynn is named after her.

Dad and Mickie cooked us Christmas dinner when we weren't able to have our normal Christmas. They stayed days and nights in the NICU waiting room when our little princess was critical. They've brought us gift cards for dinner, and been very supportive. They came and stayed with me when I had my gall bladder removal. Don't know what we would have done without them.

April was our NICU contact person for a few days. She was awesome to keep tabs on our sweet baby. She got me the cutest picture frame that says "miracle" She spent many hours in the NICU waiting room, both when she was admitted, and when she had her PDA ligation.

Anthony and Tami were so sweet to be in the NICU when she was admitted. To wait in that tiny waiting room and pray for my angel was so thoughtful.

The Killer Aunts. Sissy, Carolyn, Sally drove all of the way down here to be with us. They brought Sydney and Erica and Bella. They had to take care of Bella while she was in the hospital with RSV. They've painted our future home, and cleaned our future yard. They've driven to Dallas just to spend the weekend sitting in the waiting room, or at Brynn's bedside. They are "killer"!

Joan and Gary came down when she was delivered, have worked with Isaac on the house, and have prayed so much for us. They had to miss their Christmas too. Thanks!

Last, but certainly not least. My honey, my sweetheart, Isaac. I would not have made it through this without him. He must have the will and stamina of 100 men. He waited at my bed in the hospital for days. Barely sleeping at all. He traveled back and forth between hospitals for days to be with our little princess, and to be with me. He never left me alone. Not only does he go to school, work, internship, and NICU, but he has worked so hard to get our house ready to move in. He sends hours at the NICU with Brynn in the evenings. There were days that he would go in the very early hours in the morning, just to ensure he could see her. He is the greatest, most giving, caring husband in the world. After all that I have put him through in the last 3 months, he deserves a special place in heaven. Thank you honey for every thing.

I know there were many more family members who have helped us out, I am sorry if you were left out of this post. I am forever indebted to so many people. Thank you from the bottom of my heart for helping us through this. I am grateful that Brynn has such a wonderful family to grow up in. I will always thank God for you.

2 Samuel 2:6
May the LORD now show you kindness and faithfulness, and I too will show you the same favor because you have done this.

Monday, March 8, 2010

Baby Steps


Today a moment of panic set in. We've been wanting this for 81 days, and now I am kind of freaking out. We got moved to Baby Steps. Brynn is no longer one of the tiny tiny babies. She's within a few weeks of coming home. Oh my goodness. It's very strange. I feel like I have lived a hundred lifetimes in the Medical Center of Plano NICU. Yet today, it seems so soon. I cannot get over the shock. I thought I would be thrilled. Instead, I am petrified. Even today while we are sitting on "the big kid side" trying to finish a bottle she bradyed twice and stopped breathing several other times. Ugh.

So I came home and for some reason, the first thing on my mind was, "I don't know how to work her car seat!" So I promptly opened the box, read the manual, played with it, and as a reward to myself, I hooked her little toy doll to the handle. It's not as if she's coming home in it tomorrow, or even this week. I started thinking about the things I needed to put in her diaper bag. I can't believe that I have been a Mom for almost 12 weeks and I have a beautiful diaper bag from a friend, with the tags still attached. I am not sure that a new Mom has ever been more excited to carry a diaper bag than I am right now. Yay!

I am starting to get a little bit sad. all of my NICU friends are still there for a while. In a perfect world we'd all take our tiny tots home on the same day, and reunite the next week for playdates. Probably even our favorite doctors and nurses would show up. Unfortunately this is not a perfect world. I foresee many tears in the future. Who would have ever thought that I would be sad to bring my baby home from the hospital? But after almost 12 weeks there, it almost feels more like home than my house does.

So... Hooray for Baby Steps. Kind of.

Tuesday, March 2, 2010

New Accessories for a Diva

So all of the nurses call Brynn a diva. It all started with the micro-preemie pink leopard dress. Nurse Susan insisted that she needed a purse. Build-a-Bear has the most perfect little tiny purses. So, she got a leopard print purse. And, now that her mommy has figured out how to rig the headbands so that her hairbows will fit... she kind of is a little diva. Which brings me to my next post. Brynn will most likely need glasses very early in her life. Dr. K told us tonight that it was only fitting. Such a diva would rock her new accessory with style and grace.

She now has progressed to Stage 2 ROP with pre-plus disease. This is her 3rd eye exam and she has gone from 0 at the first, to 1 at the second, to now 2. She'll have another exam next week to determine if she'll need laser surgery to correct this. Either way, she will most likely need glasses. As soon as this is confirmed, I'll be on a mission to find some stylish baby glasses! More info on ROP below:

about 16 weeks of pregnancy, the retina, at the back of the inside of the eye, begins to develop blood vessels which provide nourishment and oxygen to the eye. Over time, this network of vessels gradually grows forward, eventually covering the entire surface of the retina. The process is usually complete at the end of term, or about 40 weeksgestation.

Prematurity can interfere with the development of these blood vessels. This condition is called retinopathy of prematurity (ROP) and it affects many premature babies. As with other conditions, the risk of developing ROP increases with the degree of prematurity. For example, about 80% of extremely premature babies, those of less than 26 weeks gestational age, have ROP whereas only about 15% of mildly premature babies, more than 30 weeks gestational age, do. The babies at highest risk for ROP include those who are born very prematurely or those with very low birth weight of 1500 g or less.

Although most cases are mild and treatable, ROP can permanently affect vision. Depending on the severity, ROP may cause minor vision impairments or, in more rare cases, blindness, especially if the condition goes untreated.

The blood vessels generally grow from areas of high oxygenation, where the vessels already exist, to areas of low oxygenation, where the vessels have not yet formed. In this way, the retina is gradually and evenly covered inblood vessels that grow from the back of the eye towards the front like a wave approaching the shoreline.

The oxygen level of the baby’s environment is an important factor for the progress of normal blood vessel development. When the baby is in the womb, the concentration of oxygen in its blood stream is kept relatively steady and is lower than the levels that will occur after birth. In comparison, after a premature baby is born, oxygen levels in the bloodstream are kept in the desired range by adding oxygento the air surrounding the baby; this helps the premature baby’s breathing. This rapid change in the level of oxygen in the baby’s bloodstream has an important effect on the regulation of blood vessel development. Moreover, if the baby is having other complications that affect the regular flow of oxygenated blood, this too can interfere with the normal growth and spreading of the blood vessels.

There are many factors that contribute to the development of ROP. The knowledge thatoxygen levels have an effect came in the 1940s. At that time, many premature babies were given supplemental oxygen whether they were having breathing problems or not. At this time it was discovered that the babies who were given high concentrations ofoxygen had a much higher incidence of ROP than babies who were not given oxygen. Although supplemental oxygen is often essential for a premature baby’s survival, especially those with the more severe form of lung and breathing complications, the level of supplemental oxygen must be carefully monitored and adjusted to keepoxygen levels in the bloodstream in the desired range. Following this adjustment, the frequency of ROP has gone down but not disappeared.

Stages of ROP

ROP is graded, or classified into stages of severity, from Stage 1, the mildest case, to Stage 5, the most severe. At what stage ROP is graded depends not only on the extent of the abnormal blood vessel growth but where in the eye the growth has taken place.

Fortunately, most cases of ROP are mild and resolve spontaneously. However, when ROP is severe and does not resolve with maturation of the baby, if left untreated these abnormal blood vessels can continue to grow on the surface of the retina and result in formation of fibrous tissue. This in turn can pull on the retina and may lead to partial or full detachment of the retina.

All premature babies are screened for ROP. If a problem is identified, screening will continue at regular intervals. If treatment is deemed necessary, surgery, usually with laser photocoagulation or cryotherapy, a kind of freezing, is performed.

Monday, March 1, 2010

Sad post...

This is my favorite song for a trial
"On the Road to Beautiful" by Charlie Hall.

I crumble at Your kiss and grace
I'm a weakling in the dust
Teach me how to cling to You
With all my life and all my love

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

And on the road to beautiful
My seasons always change
But my life is spent on loving You
To know You in Your power and pain

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

You're my portion in this life
You're my strength now in my fight
And to You I pledge my heart
In the pain and in the dark I'll love You
I'll love You, I'll love You

I'll love You...

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

And my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing
I love You

So. I had a weird day. Sometimes it's just the little things that set me off. I got off work a little early, but as I am on my way out the door, the sweet girl at Starbucks says to me, "When are you going to bring your baby up here for us to see?" I politely said (for at least the 5th time to her in the past week) "My baby is still in the hospital." Not to mention, even if she were out of the hospital, she won't be going anywhere. As soon as I got out the door, I burst into tears. I don't know what was different today, but I do not need to be constantly reminded that my beautiful baby girl is now 74 days old and has never slept in her fairy princess bed. She hasn't been able to use her giraffe swing, or ride in her pink car seat. I know people don't know how to react to my situation, but why can't God just help me out and close their lips every once in a while? Most days it's no big deal. I don't mind to tell people about my little girl. But today.... ugh. I cried for a solid 30 minutes.

TLC this week was about NICU emotions. One of the things that really hit home for me was the fact that all NICU moms need to go through a grieving process. Not to grieve for their baby, but to grieve for the loss of their dreams. Grieving that you never got a big belly that people wanted to touch. Grieving that you didn't go home from the hospital with your nurse pushing you down in a wheelchair with a baby in your arms. All the things people usually associate with pregnancy. Sometimes the loss of a dream, the loss of experiences is something we never think about, but it is very real. For me it really hit home today. I feel loss for the fact that no one will ever get to peek in her stroller at the grocery store and tell me how cute she is. The loss of my maternity leave to be with her. Today my loss was apparent to no one but me. Every day I leave work and go past the untouched nursery to go shower and change clothes so I do not bring infection into the NICU. Most days I am OK with that, but I want God to filter some conversations for me tomorrow, give me a break.

How Can I Help? Twenty Do's and Don'ts When Talking to Parents of a Preemie Baby

By Menetra D. Hathorn, author of A Mother's Diary: How to Survive the Neonatal Intensive Care Unit

Advice on what to say and do (and avoid!) when your friend or relative has a baby in Neonatal Intensive Care Hospital (NICU).

What's more disheartening is that even after we go through all of the explanations, it often seems that the listener's response is still a perpetration of some myth or misperception about preemies. Perhaps the most popular one is, "How much does she have to weigh before she can come home? 4 lbs.?" I heard this several dozen times while my daughter Rayven was in the hospital. She spent the first three moths of her hospital stay on a ventilator (A breathing machine) which meant she was incapable of breathing or eating on her own, so it didn't matter if Rayven weighed 4 lbs. or 14 lbs.! She wasn't coming home!

Please don't fall into this trap. It took all I had not to roll my eyes and lecture my inquirer because of their ignorance, and this is only one of the many pitfalls to be avoided. Because there are so many, I have included a long list of do's and don'ts to help you.

1. Don't judge the parent's reactions. There is no right or wrong way to deal with a premature birth.

2. Don't compare the baby's needs to those of a full-term baby OR to other preemies.

3. Don't just say "Call me if you need something." Do something! You can provide dinners, do yard work, go grocery shopping, offer to drive them to the hospital, and/or clean their house.

4. Be available when parents ask for help. If we ask for help, that means we needed it a long time ago.

5. Don't discuss the possibility of death or severe complications unless the parents initiate it.

6. Be inconvenienced. Helping someone should not always be bound by our comfort zones and busy schedules.

7. Buy appropriate gifts for the family, such as disposable cameras, calling cards, rolls of quarters, snacks, magazines, photo albums, journals, scrapbooks, and gift cards.

8. Support and praise a mother who is pumping breast milk during the baby's hospitalization. If is very difficult to maintain a milk supply when the baby is unable to nurse directly from the breast.

9. Baby-sit free of charge if the parents have older children. You can do this so parents can visit the hospital together or go out on a date.

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Don't ask "when is she coming home?" The parents want eth baby to come home too, but there are no quick fixes in the NICU. Besides, they will let everyone know when the time finally comes!

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Don't offer too much unsolicited advice.

15. Show interest in the baby and the parents throughout the hospitalization and after the baby has been home a while.

16. Make sincere compliments about the baby whenever you're visiting the hospital or looking at photos.

17. Don't compare their experience with someone else's hospitalization.

18. Offer a hug when the parents are expressing grief.

19. Avoid discussing disappointing news or concerns within hearing distance of older siblings. The older children are suffering as well.

20. Nicely recommend that counseling be sought when parents show signs of losing control.

If you have already done a few of these "don'ts", try not to worry about it too much. Most parents understand that it's difficult for you to know exactly what to say and do.