Our Little Girl, Our Big Miracle

In general, I do not use the term “Miracle” lightly but I honestly believe Brenna’s life is truly a miracle.  Yesterday she underwent surgery to have a VP shunt installed to drain excess fluid from her head.  This is the 7^th surgery Brad and I have endured on our girls (Brenna’s 5^th) and I can honestly say it never gets easier.  In fact, this one was the most difficult for me yet.  I held her all night before the surgery and tried to prepare myself for the following day but nothing can prepare you for handing off your wide eyed baby girl to the pre-op nurses in the OR and knowing what awaits her.  After about an hour and a half the surgeons came out; the surgery was a success.  The most ideal place for the shunt to drain is the abdominal cavity and thankfully that is where the doctors were able to put it.  Unfortunately, when Brenna’s stomach was opened up it revealed numerous adhesions as a result of her previous perforated bowel which is not good news, but also not surprising.  The end of the shunt must be placed in an area free of adhesions or it will not function, thankfully the surgeons were able to find one pretty big pocket free of adhesions.  However, should the shunt need to be revised in the near future, it will not be an easy task and may not even be able to go to the stomach.  Please rlay that Brenna’s new shunt will hold out long enough for the adhesions to clear. We are told to anticipate at least 5 shunt revisions in her lifetime, we just pray she doesn’t need one anytime soon.  The next few days will determine whether this shunt is functioning as hoped.

Brenna’s surgery started around 8 and by 1 she was off the ventilator.  Soon after she decided she no longer needed her second IV and proceeded to pull it out on her own rather than wait for the nurses to do so.  By the evening she was back in mommy’s arms and playing and talking. Since the first self-performed IV removal was such a rousing success, Brenna decided to attempt to remove her other IV during the night.  While she was successful in removing this as well, it was short lived and another had to be put in for her fluids.  She is still rather fussy dealing with recovery and an empty belly but overall doing amazingly well. 

Brenna

As I said above, I try not to downplay true miracles by using the term on a day to day basis but as I had a lot of time yesterday to reflect on these last few months I can honestly say Brenna is a miracle.  We are so very fortunate that given the circumstances surrounding the triplets’ extremely early birth and the complications that can result that Anna and Lucy have done so very well…this is not the norm.  While they had their issues and will likely face at least a few more, we are thankful for what we have.  It has been said that God never gives you more than you can handle (with His help of course) and I am so thankful for Anna and Lucy’s  paths thus far as we were in for a real rollercoaster with Brenna, one that we are probably not done riding yet. 

Brenna’s troubles started early on (about a week after birth) with her perforated bowel.  We knew things were serious when we received a call to hurry back to the hospital after just leaving one night.  We were told she was very sick and it was very obvious from her appearance that she was not doing well.  We were prepared by the NICU staff that it was possible she would not survive this complication.  Her very first surgery was to repair the perforated bowel.  There were 2 options for surgery that night, one to attempt to fix the problem and repair the bowel, the other a temporary fix to attempt to save her in the short term.  Brenna was in such bad shape that the first surgery wasn’t even an option as she would not have survived it.  So, we had to go with the temporary fix and hope she pulled through and stabilized for a later surgery to repair the problem.  Weeks later the doctors were astounded to discover than her bowel had repaired itself and wouldn’t require further surgery.  The gastro surgeon was so amazed with our girl, he had never seen this great a recovery in his long career as a surgeon.  Only later in talking to our NICU nurses did we truly understand how grim the situation was.  We are so grateful for the prayers raised up for Brenna and we know God answered those prayers.

Brenna is such a little trooper; having now endured 5 surgeries, battled IV infiltrations, infections, and undergone too many sample draws and blood transfusions to count and is still such a sweet lovable little girl.  She has many NICU nurses fighting to care for her because she truly is something special, a gift from God, and unlike any other.  Only after the girls were born and named did I take the time to look up the meaning of the names we chose for them.  Lucy means light and she definitely is the attention grabber with her funny expressions and vocal personality.  Annaliese means grace and she is our mild-mannered joyful little girl.  I was initially disappointed at the meaning of Brenna’s name, after the other two girls’ names having such pretty meanings.  Brenna means hill…how dull is that?  At least that is what I first thought.  143 days after her birth and many complications later, I think she has the most perfect name possible for her.  Since day one she has climbed hill after hill put to her and does so with a determination unmatched by anyone I’ve ever met.  As one wise nurse has said “I’m amazed that such a little person can teach us so much.”  

 Brenna is going to be a powerful warrior for God; an example of HIS undying love and faithfulness even in the most desperate of times.  One look at her and you have to know there is a God with the power to overcome all things and while I wish she never would have had to endure all this in her little life I know she will make the best of what she has been given and I pray I will always do the same.  In preparing for this shunt surgery one of the difficult things I’ve had to face is that this will make Brenna visibly different than “normal” babies for quite some time.  Her shunt will be very visible until she has enough hair to cover it.  It breaks my heart that my little girl may have to endure stares and questions that other kids won’t but what I’ve realized these last few days is if she can handle all she has, a few odd glances and inconsiderate questions will be nothing for her.  Still, I wish they weren’t going to happen but I have the utmost faith that Brenna will be just fine.  

I can’t wait for everyone to meet this little girl.  She is unlike any other and I thank God she was given to us. If all goes well, she should be home with us soon.

In His name,

Angie, Brad, Anna, Lucy and Brenna

Update 1.18.2011



Hello world, it’s been a while. Now that things have calmed down a little after the holidays, we thought it might be time to try to write again. Life has been busy between appointments and trips to the hospital, washing bottles and changing diapers, but we are managing. Who knew babies were so much work? J

The holidays this year were a little difficult for us. We never thought we would be spending our first Christmas as a family in the NICU, but we were determined to be all together on Christmas morning. We packed up and spent the night in Brenna’s room, all five of us. FYI, it takes a lot of stuff to sleep over somewhere with two babies. We did get a couple of “You’re crazy” looks from some of the nursing staff, but it all worked out. We had fun, despite the circumstances we found ourselves in. Not being able to spend time with family was difficult, but it was in the best interest of Anna and Lucy. Cold and flu season is no time to take a micro-preemie out and about, no matter how well they are doing.

Lucy, Brenna and Anna at Christmas

Home life with two babies; where to begin? Anna and Lucy have been home for just about two months now, and they seem to have adjusted very well to it. It’s hard to believe how fast they are growing.  Both girls are pushing 9lbs and their little faces aren’t so little any more. Just this weekend, we noticed that their newborn clothes weren’t fitting so well anymore, so we had to quick pull tags off some 3 month outfits. Didn’t we just buy these outfits, how can they not fit anymore? We must be doing something right.

Since coming home, Anna has been progressing quickly. She was discharged on a ½ liter of supplemental oxygen. She is now down to 1/64^th liter, and will more than likely be off oxygen all together in another couple of weeks. We look forward to upgrading her to the wireless version. No oxygen = no more monitors = no more annoying beeps for no reason. She has also become extremely active during her awake periods, talking, smiling, and tracking objects.  She is definitely a daddy’s girl. It never fails that when she hears Daddy, she’ll squirm, lurch, and crane her neck in every which way to find him. She has her days and nights figured out now, which is nice. When she came home, she was backwards, no doubt in part to some late night play time with some nurses who shall remain nameless.  Anna was also the first to roll over, front to back. She was apparently tired of her tummy at the doctor’s office the other day and rolled over. It caught all of us by surprise, even the doctor. She had been doing her baby pushups for a while, and then BOOM, roll over.  Anna does still have some fluid in her ear canal, so we haven’t been able to check her hearing in her left ear, but we go monthly to see if it has drained yet so we can get her hearing test done to verify everything is ok. But it is a minor detail in the grand scheme of things. She also still has some minor issues with her eyes, but the doctors don’t feel like it’s going to develop into anything they need to act on.

Anna Banana

Lucy has also been making great strides since coming home. She is still our vocal baby, but she talks more, and cries less. She is getting pretty good at focusing on and grabbing objects, and loves the bath tub. Not during bath time, she just likes to sit in the bath tub, but hey, who doesn’t? Lucy also rolled over for the first time last week front to back, and she’s actually almost got back to front down. She’s got the leg kicked over, she just needs to build up the momentum to flip over her shoulder, but it won’t be long. We’ve noticed that Lucy isn’t content lying on the floor any more, she really enjoys sitting up and seeing the world. So curious, so ready to get out there and explore.  Medically, Lucy is pretty much clear of any issues at this point. Her only real concern coming home was her eyes as well, but she has been cleared of any problems, so we are relieved with that outcome.

Lucy mugging for the camera

Now to Brenna; so much has changed with her since our last update. At the time, she had just gotten off a lot of meds and started eating regularly again. We are happy to report that Brenna is doing about as well as she can be at this point.  Her weight is on track with the other girls, almost 9lbs, and she is 22” long. Feeding is going well, most of her feeds are coming via bottle these days. It does seem to wear her out a little, but she’s a little champ and pushes through. Her jaundice is all but gone, and she is off all but a few meds. We did have to deal with a somewhat unexpected surgery to correct an issue with one of her eyes, but she bounced back extremely quickly from that procedure. Thankfully, the procedure corrected the issue, and the doctor’s don’t seem to think it will require anymore medical intervention.

Wireless Brenna before getting tubes changed

Even with all the progress our little Brenna has made, she still has one pretty significant hurdle to clear. Due to some complications of being extremely premature, we have known for a while that Brenna is going to require a shunt to help drain excess fluid from around her brain. With her previous abdominal issues, she hasn’t been medically ready for this procedure until now. Surgery is scheduled for Friday (1/21) morning at 7:30. Assuming all goes well and there are no complications after surgery, the only thing keeping her in the hospital will be learning to eat consistently.

Brenna helping Mommy hold the bottle just right

Daddy and his girls

We have asked for a lot of prayers in the last 4½ months, but this week we are asking again for all you have and maybe a little bit more.  We can finally see the end of the road. There are a lot of unknowns with Brenna, but the one thing we do know is we need her home with us.  Anna and Lucy have thrived at home, and we have no doubt Brenna will do the same, but we have to get her there first. She is our little warrior. We don’t know how she does it, but she does, and we will forever be inspired by her heart and her will. Please keep her in your thoughts this weekend as she takes her last big step towards coming home. Thank you and God bless.

In His name,

Brad, Angie, Anna, Brenna, and Lucy Kamps

Update 12.8.2010

Greetings from the NICU…and home. Life has certainly changed since our last post. Anna and Lucy are adjusting to home with Mommy and Daddy. Brenna is still in the NICU, but is making positive strides.  It’s been difficult to split time between home and the NICU, but we do it because we have to.

Our last post, we detailed some of the trials Brenna had been facing with infections, and possible tummy issues, among other things. Brenna has been looking and acting like a new girl in the last couple of weeks. After several rounds of meds to alleviate swelling and some steroids for an extra little burst, she is off the vent and back on VapoTherm nose prongs. She gets tired easily, but after a month of the vent doing most of the work, it’s understandable. Feeding is going well, she’s getting 45 milliliters of fortified milk every three hours; the most she had previously was 8 milliliters, so needless to say, we are relieved her digestive system seems to be responding.  She’s gaining weight, 6lbs 2oz at last check, and we feel confident it’s legitimate weight, not skewed by fluid retention. All of her IV lines have been removed and all meds are now being administered orally through her feeds. She is a little jaundiced, but food and getting rid of the IV fluids should help.

All in all, she is vastly improved from just a few weeks ago. She is more alert and awake than we have really ever seen her, and we love every minute of it. She looks right at you with her big brown eyes and we can’t help but smile every time. It’s so nice to see her wanting to interact with you and her environment.  We brought her a swing so she can get out of her crib now and again and sit up, and her nurses were nice enough to find a radio, so she has been listening to Christmas music for the last few weeks. Normally, the rule is no Christmas music until after Thanksgiving, but Daddy will let it slide for now. We are truly amazed at her progress and we pray she continues to improve so she can join us and her sisters at home. 

Brenna Bear

Home life… where to begin? We still can’t believe we have two of our girls home with us now. It was a little surreal at first. In the hospital, they were our babies that we got to visit. Now, they are our babies for who we are completely, totally responsible for.  We knew it was going to be a lot of work, but I don’t know if we really knew how much work it was going to be. For the most part, the girls have taken it pretty easy on us. There have only been a handful of sleepless nights so far. Our days are filled with doctor’s appointments, bottles and diapers. Lucy is still loud, Anna is quiet, but she seems to be learning from her sister. She has been a little more vocal about things the last few days, but it’s not nearly as loud and demanding as Lucy. At their last check up, both girls weighed exactly the same, 5lbs 15 oz, so we may have three 6lb babies by the time this gets posted. We can’t believe how far they’ve come since birth.

So overall it’s been a good couple of weeks. Dividing time between home and the hospital is hard, but all three of our girls need us regardless of where they are at, and we’re going to make sure we are there.  We thank God our parents are close, as they have been wonderful babysitters. Without them, we’d be hauling the girls back to the hospital everyday to see Brenna. They have visited, but leaving them at home with grandma and grandpa really give us some quality time to focus on Brenna, and I feel like it has helped her tremendously.

Anna Banana

Lucy Monkey

That is where we stand right now. As always, prayers are appreciated. We see them working every time Brenna peeks at us with those big brown eyes, or Lucy wails for her bottle, or as Anna snuggles in on our chest for a little cat nap. Having Anna and Lucy home has really made us realize how far they have come, and how far they still have to go. We look forward to getting Brenna home and starting life as a family of five together. Have a good holiday. 

In His name,

Brad, Angie, Anna, Brenna, and Lucy Kamps

Update 11.17.2010

Greetings from the NICU. It’s been a while since our last update. We’ve been busy with growing girls who require more and more hands on time from Mommy and Daddy. Weeks 9 and 10 were stressful for us, but week 11 is shaping up to be a high point on this ride. 

Brenna, as always, has been keeping us on our toes. Shortly after our last post it was confirmed she was in fact battling a urinary tract infection, which can cause many issues with preemies. By the end of the week, Brenna had become very swollen, and all the extra fluid she was carrying forced her back to the high frequency vent she was on after birth. X-rays also showed abnormal gas patterns in her abdomen, which was a cause for concern with her prior stomach issues. She was monitored closely and started on a 10 day run of antibiotics to battle the infection. We are happy to report the infection is under control and she is back eating and tolerating her feeds well. Brenna is still holding a bunch of extra fluid, but she seems to be feeling better. She is a bit more active and will open her eyes when Mommy and Daddy talk to her.  She is off the high frequency vent, but still requires a breathing tube. It’s very apparent she is aware of the tube and she does hate it so very much. Her CO2 levels have been improving slowly, so we pray she is able to get off the vent soon. We think she’ll be a happier girl once that happens. We say it every time, but she is our little warrior. She has more heart than any little girl we have ever met and, we thank God for our little Brenna Bear every single day.

Anna and Lucy have had eventful weeks as well, but for different reasons. Both girls have been breast/bottle feeding for the last couple of weeks. Feeding is one of the hardest things to learn for preemies, and both girls have done outstanding. As a result, they have been gaining weight like crazy. Both girls are well over 4lbs, with Lucy at 4lbs 6oz and Anna at 4lbs 12oz. They were moved out of their isolettes two weeks ago and have had no issues adjusting to open air cribs. Lucy is very vocal these days, and she has no problem letting you know when she’s ready for food/diaper change/attention/etc. Anna is starting to make some more noise, but she’s our quiet girl who waits patiently for Mommy and Daddy.

We are continually amazed at how well Anna and Lucy are progressing at 11 weeks old, which brings us to the high point we alluded to earlier: Anna and Lucy are coming home this week! Last week, the discharge coordinator came to talk to us about starting the process of getting them home. It was first brought up last Monday to start preparing and it sounded like it would be a few more weeks. We got a phone call on Thursday that Lucy was ready and she would be going home this week. Anna had just started feeding so we thought we would get Lucy home, and get adjusted, then bring her sister home. But Anna took to the bottle so well, they made the decision that she is coming home too. She will be on oxygen, but that is a small price to pay to have our two of our girls home. Anna was discharged today, and barring any changes, Lucy will be discharged on Friday. Doctor’s orders are to continue to restrict visitors pretty tightly while the girls adjust to a new environment, so even though they are sprung, it might be a little bit longer before you can all meet them. It’s hard for us to say that, but we are absolutely going to err on the side of caution with our precious babies.

As excited as we are to get them home, we are saddened that Brenna will not be able to join them for a while. With winter coming and the other girls home, it will add another dimension to our already upside down lives, but we’ve said before, “It’s never easy”, and we’ll make it work.  Brenna is improving, but she is still a sick little girl. She’ll have her own room, so she can have the quiet, relaxed atmosphere she needs to get herself back on track. She still has a long road in front of her, but we are encouraged by her progress in the last week.

As always, we appreciate the prayers and ask you continue them for our family. We had thought having one home by Christmas would have been great, but having two at home before Thanksgiving is beyond anything we could have imagined. Thank you for all your support and enjoy the upcoming holiday season.

In His Name,

Brad, Angie, Anna, Brenna, and Lucy Kamps

Brenna's tube is out...time for Paci!

Some new pics of the girls!

Brenna

Brenna

Anna

 

Lucy

 

Greetings from the NICU. Well, here we are almost 8 weeks in. It seems like every day this week has been a day we have some laughs, shed some tears, and then start all over again. The girls continue to amaze, delight, confuse, worry, (and any other verb you want to throw in there) us, but every day we learn something new about who they are. 

We had a long week with Brenna.  Recovery from her PDA ligation has taken a little longer than we had anticipated. She hasn’t been herself; very swollen, easily agitated, and overall just not a happy camper. As if trying to recover from surgery wasn’t bad enough, the doctors discovered a small stress fracture in her left arm, just above the wrist. Babies usually get most of their calcium in the third trimesters, which we missed. And whatever she did get, she had to split three ways with her sisters. They have bumped up her calcium, and we just need to let it heal. The fractured wrist pared with the vent tube down her throat may explain why she’s been so cranky. Much to the relief of her mommy and daddy, her vent tube came out Saturday morning and she is back on Vapotherm (nose prongs) like her sisters. The first 3 hours we weren’t sure she was going to stay on it for long with some high CO2 levels, but we just needed to give her some time to adjust. Her color is looking very good, she’s tipping the scales at 3lbs 2oz,  and there is a night and day difference in her attitude. She seems like our sweet little Brenna again, we missed our little girl.  While she seems to be feeling okay, we've learned there may be some other issues that mis Brenna may be struggling with.  On Sunday, some routine tests came back and they suggested she may be getting an infection (a very scary word for such a little baby).  Preliminary cultures of her spinal fluid came back normal however we are still waiting for the blood and urine results.  Additionally, Brenna's tummy turned bright red early Monday morning.  X-rays were ordered and it appears her intestines aren't very happy right now.  We pray this isn't a return of her earlier stomach issues.  So again, Brenna has had the small amount of milk she was getting taken away until we can figure out what is going on.  Please pray for our tough little girl.  She has had to (and continues to) deal with far more than she deserves and mommy and daddy just want her to get a break from all the surgeries and illnesses so she can catch up with her sisters.  We will keep you posted on what we find out.  This tiny baby is absolutely amazing.

Brenna, now without vent tube!

I don’t know what to say about Anna and Lucy except WOW! During some of our conversations with nurses last week, it’s become apparent they are not acting like typical 25 week babies. Both girls have grown so much in such a short amount of time. Typically, once they hit 3lbs and are able to hold their body temperatures stable, they can move to cribs. Anna is weighing in at 3lbs even, Lucy at 2lbs 14, so they are both getting close. We’ve been dressing them in layers, and steadily decreasing the temperature in their beds to prepare them for jailbreak. Both girls are doing very well on their respiratory as well as feedings. Lucy has been given the go ahead to start nuzzling with Mommy to simulate breastfeeding, and so far she has done very well with it. She may have accidently got some of the “real deal” the other day. Feeding can be an issue with micro-preemie babies, so to see her interested already is a step in the right direction.

That’s where we stand for now. As always, all of your prayers are appreciated. Every time we sit down to write, something else comes up, so apologies on the gap between updates. There doesn’t seem to be enough hours in the day between diapers, feedings, doctors and everything else that goes on here. Until next time, God Bless.

In His name,

Brad, Angie, Anna, Brenna, and Lucy Kamps