Daddy and Beckett ...the 2 BTGs :)

They sound like they could be a band or something!

Benjamin Thomas Gramkow and Beckett Thomas Gramkow...that sounds so cute!

Ben got to hold Beckett kangaroo care, skin to skin, from 9pm to 10pm last night. He was a good boy too, the nurse actually turned down his oxygen because he was doing so well. His O2 is hanging out around 25 percent. His CPAP isn't sealing all the way, and his nose is too small for the next size up mask, so they will maybe have to use some pretty nose tape to help seal it. He has had some desats and they think that might be why. They did have to stimulate him for two episodes yesterday. At 2 pm he needed to be simulated due to an episode and the nurse also noticed his tummy was really distended. She checked his diaper and it had watery stool, so they thought maybe an obstuction was in his bowels. She started wiping and then he started pooping ... phew. They still did an x-ray, but it just indicated that he had lots of air in his tummy. He is starting to poop better, and that should help with his feeds.
He now weighs 1 lb 15.8 oz, so he gained! He has tolerated his feeds this morning of 2 mL with residuals no higher than 1 mL. And the green is gone! Yay! Labs were okay this morning, but his bilirubin is 8.9 ... so he might earn his tanning goggles back. The nurse also thinks he may be refluxing a little bit. He got a bath (wipe down with saline wipes) this morning.

We got our house cleaned this morning ready for Ben's family to come next. Feels good to have everything semi in order because it was a tornado here this past week!

Pray today for Beckett's ultrasound. This is where we will find out if he has any head/brain bleeding. They said results might not be back for a day, and no news is good news the first day. If they find something, Dr. Grubbs will meet us with immediately. Dr. Grubbs hasn't rounded yet today, so we don't fully know today's plan of action.

We are going to start making airplane decorations for his room today! It was a pretty good night and morning for my Beckett...mama is happy.

Pray for safe travel for our family coming and going today. Thanks for all your prayers.

Heart to Heart

I got to hold my sweet Beckett last night from 9 pm to 10 pm. He was such a good boy and didn't desat (drop in blood oxygen saturation from forgetting to breathe) at all, even though his mama was crying the whole time. His heart rate did jump a little, but his nurse said he was also moving around a little bit and that could be why.

Skin to Skin. I could barely feel him laying on my chest. The only time I could really feel him is when he moved. I was happy to feel his touch, but it was also sad because it reminded me of how Beckett felt to me when he was inside. His movements are twitchy and unpatterned, typical of a preemie. He still likes to practice physical therapy and is used to boundaries. That is why I held him ever so close and cupped my hand around his little bottom with his feed tucked under. My left hand on top of his back and trying every so hard to focus on keeping him warm. At his age, he doesn't have the ability to maintain his own temperature. His CPAP (breathing apparatus) – which I think I'm going to call his football helmet from now on – his CPAP tubes pressed against my collar bone. His IV lines and other assorted leads and wires were taped to my shirt. Daddy had to give me the play by play as I couldn't see him. He yawned once and even sneezed.

His daddy was close by my head as I held him on my chest, wiping the flow of tears one eye off at a time so they wouldn't fall on Beckett. We whispered sweet words to our sweet Beckett, prayed for his strength and thanked God for his good day today. We told him more about his big sister that couldn't wait to meet him back at home. Ellie got Baby Brother an airplane to put in his isolette. So we told him about that too. We spent some time thanking God for our sweet little family. Ellie has done SO well with being patient to see Beckett, and playing with Grandma and Grandpa Weber, Aunt Wendy, and cousin Maizee in the hospital lobby. The nurse was so sweet as she peeled him off my chest, turned his little body over and asked for kisses from mommy and then kisses from daddy. Beckett got put back to bed and ... let's just say I may have had record milk pumping. Then we said night night to our sweet little boy. Hunched over to start singing Goodnight Sweetheart, we looked at each other and said, we gotta come up with a new song! We sang Goodnight Sweetheart to Ellie 3 years ago. So much of this journey so far has felt like we have just been taken back in time. But somehow that song doesn't work quite the same way for our little boy. Any suggestions for a song to serenade our sweet boy?

Weekly Update: Week 25

Tomorrow marks Beckett's one week birthday! Beckett was born at exactly 25 weeks gestation, so tomorrow he will be 26 weeks. We have been struggling to keep the blog updated with his day to day journey. So we decided to celebrate his weekly birthdays by posting a recap of the week. For this weeks update the posts were mainly grabbed from Facebook posts. They may be in rough form. But it will certainly get you up to date on his physical condition.

Friday, September 23, 2011
Beckett Thomas Gramkow just couldn't wait to meet us. Born at 4:43 am, 25 weeks gestation, 2 lbs. 2.6 oz. 14 inches long. Just couldn't get mama's contractions stopped...Mr.Beckett just wanted his own special story. God is already blessing us...we got to hear him cry 6 times after he was born..and it was more than Ellie's first cats meow! Sweet music to our ears. Thanks for the prayers. Beckett Thomas Gramkow...I may be tiny, but I'm a fighter...

Beckett has had a good birthday...he actually started feedings today! 2 mls already of mama milk and tolerated it! He also has done great all day on CPAP (breathing). His eyes are open, even though he prefers to wink :) Took some birthday pics today, and will try and get blog updated tomorrow. Thanks again for all the prayers...thanking God for our sweet new miracle.

Saturday, September 24, 2011
Started blog: elliegramkow.blogspot.com and Update on Beckett's day: feedings of mama milk 4 mls every 3 hours, tolerated most feedings; has had 2 apnea/bradicardia episodes but that is on the low end for his gestation, and remember these are just part of growing up as a preemie; he did lose 10 grams...great urine output, but needs to have a bowel movement soon; still sporting the CPAP and doing great! A good day!

Sunday, Sept 25, 2011
Heading down to the NICU to find my sweet Beckett, date night with mama. Gotta get there for temp check and diaper change for the second time! Beckett is sporting tanning goggles today, and they increased his feeds to 6 mls!

Update on Beckett: did do an x ray tonight and came back clear. So thankful. He is still having the dark residual, will watch and re x-ray tomorrow. Did ask more questions about NEC, and they did check on the xray, but no indication of NEC at this time. Thanks for praying. Please pray for rest tonight for both mom and dad. I. am. exhausted.

Here we go Team Gramkow. Please pray for Beckett's bowels. He has had dark residue in his residual (the milk he is not digesting) the past few feedings, and the doc is ordering an X-ray tomorrow. Please pray for Beckett's protection from NEC. This is a serious preemie intestinal disease. He has been eating so well since he was born...pray for strength and trust for mom and dad too. I'm being discharged tonight.

Monday, Sept 26, 2011
Beckett is telling us he is tired. Currently stopped all feedings to give give rest to his tummy. Also had big cluster of apnea/bradies because tummy filling up with air from CPAP. He's telling us he's tired and forgetting to breathe. Nurse says he has been resting well though. X rays and labs checked again, still no NEC, rather preemie motility issue with digestion.

Beckett had a pretty good day. He actually started out the day with no food. They stopped his feeds last night due to brown residual. Started it up again today 8 mls to see if he could get thru this digestive motility issue. Renal ultrasound came back clean, x ray clear too. Breathing well on CPAP still! They had to change his hat, and so we got to see his head with lots of dark hair! Busy day.

Tuesday, September 27, 2011
Beckett is back to NPO. His tummy just isn't tolerating his feedings. :( he is having dark, brown, green residual which is concerning. He didn't digest 5.5 ml left of his 8 ml feeding at 8pm. Increasing tpn now so he still gets nutrition, however glucose is high now. Has had a few bradies too. Labs have come back good, bilirubin is going down (one for jaundice); red blood cell recheck came back good.

Good night for Beckett...his day of resting and fasting. Bowel sounds are a little better, will do X ray in morning to see if he is ready to start feeds back at 2 mls again...starting over. Weight still dropping though. :( now 1 lb. 14.3 oz...lost 10 grams last night. Busy business day for mom and dad too. Fun quick trip to buy buy baby and target with mom and wen too.

Wednesday, September 28, 2011
He took his feedings through out the night, he had some residuals, so today we are taking it slow and just going to see how the day goes.

Beckett gained 10 grams! So back up to 1 lb. 14.7 oz! They had to move his CPAP size prongs to size 4 because her was having too many episodes. Actually still waiting on PICC placement. Please pray for Beckett to be ok with Mama not coming to see him until this afternoon. I'm exhausted, and so will be resting at home, and hanging out too with my Ellie who is showing she wants some mommy time too.

Blood transfusion day for my Beckett...he is getting a blood transfusion these next four hours...and then will start feeds a few hours after the transfusion...doing ok..Dr.Grubbs prepped us for this being the case soon, and he might have to have more than just one...

I get to hold him tonight.

I got to hold my Sweet Beckett for 1 hour. I could barely feel him on my chest, but it was oh, one sweet hour. Hopefully Daddy's turn tomorrow. What a great end to another blessing of a day.

Loved holding my Beckett last night, but praying for extra strength today. Every time I wake, I'm reminded of this new reality...and I still can't believe we are going down this road again. Mama has a heavy heart today.

 Thursday, September 29, 2011

Today Beckett weighs 1 lb 15 oz. That means he has been steadily gaining weight over the past two days. It much (I think I gain 10 grams when I just look at a piece of chocolate.) but we will celebrate every little bit. We are definitely looking forward to passing that 2 lb mark. His feeds didn't change, still 2 mL. Dr. Grubbs wants to let him take it easy for today and then nudge him a little tomorrow. He also ordered glycerine suppositories every six hours for 24 hours.

His oxygen was up to 24% today compared to the 21% room air he had been getting. I asked Dr. Grubbs about it and he said he was just surprised they hadn't needed to raise it before now, and besides it was just a little bit. These doctor folks are pretty good for keeping the parents in check when all they want to do is find something to obsess over.

He has had regular blood tests for his blood gas and blood sugar levels since birth. (We're glad he has a PICC line in so they don't have to poke him to draw blood every day.) Today's tests were good on both. This is an indication that he is responding well to the blood transfusion. He get's an A+ for a positive blood transfusion with his A positive blood. Since he has had a history of good blood gas tests, they're going to stop doing the test unless he gives them a reason to start it back up. They'll still test his blood sugar as long as he's on an IV for nutrients. Originally they gave him the standard dose of sugar in his IV, but they had to lower it because they found that his blood sugars were elevated. That's because his tiny little body doesn't know what to do with all that sugar. It's no cause for concern, he's just still developing. I'm sure he'll figure out how to use lots of sugar within a few years from now.

His biliruben levels were good too. So no jaundice and no more photo therapy light. (at least for now)

Overall today was a good day for Beckett. Sad that a good day for him still involves regular glycerin suppositories.

Dear Sweet Beckett

My Sweet Beckett,

This is your mama, and I’m so proud of you. I am so blessed to be your mama. I’m so glad that God chose me to be your mama. Got it? Even though your early arrival is really hard to deal with, I wouldn’t trade it for the world to be your mama. And I’m going to do everything I can to love you extra while you have to grow outside my womb these next 15 weeks. You are the second most handsome guy in my life. (I do like your daddy lots). I am so thankful that you have come this far after just 5 days of life. You have amazed us with your breathing, not needing the ventilator, practiced eating my yummy food I prepare for you every two hours, trying to keep your Apneas and Bradicardia’s to a minimum, shown us just how amazing God knit you together through your shiny, transparent like skin and tiny-ness. I know you’re telling us you get tired sometimes, but we do realize that we’re asking you to be extra strong by eating and breathing already like a big boy. Mama has cried many tears of joy and thanks that you’re handling it so well. It’s hard not to compare things to your big sister, Ellie, but you seriously son are ROCKING IT!

As for today, my sweet Beckett, thank you for chatting with God and the both of you blessing us with a good day. Mommy borderline had a breakdown last night, and was just tired from everything that has happened the past week. I don’t want to be away from you this much. I wanted so much to bring you home when I had to go home from the hospital. But I know you need that fancy electronic equipment to help keep you growing until you’re a big boy…and your daddy is just fascinated by that stuff too, which I think is cute. He’s going to write some more tech spotlights because some equipment has changed since your big sister was tiny like you. She had to take some time growing in a hosptial too. I guess you guys are kind of in a club now. I pray that you two are just blessings to everyone you meet because you both are tiny miracles from God. Good job with your blood transfusion today. I heard you handled it well, and I am so proud that you are trying to start eating again. 2 mls is a good start over. And we’ll start over as many times as you need to make sure your tummy is ready. Beckett, we are so blessed that you have such amazing care at this place called the Harris Downtown Hotel, I mean NICU. Dr. Grubbs is an amazing man, and so knowlegable in taking care of micro-preemies like you. He even said that he’d treat you like his own son until we get to bring you home. That made mommy and daddy feel confident in his care for your precious body. Beckett, God blessed us with a private room accomodation at your hospital too. We are going to decorate it tomorrow with Airplanes because daddy works at that Lockheed place where they make cool planes. You will think it’s so cool learning about what Daddy does for his job. We are so proud of him too. I know he can’t wait to tell you all about it. Thank you today baby boy for feeling well enough that MOMMY GETS TO HOLD YOU! Yes, that deserved to be in capital letters. Mama is going to get to hold you tonight because you finally have your lines out of your umbilical area. And when I hold you, it’s called Kangaroo care, kind of a cute name, but we’ll be skin to skin little buddy and I can’t wait. I’ve sure missed holding you these past 5 days. And it’ll be different this time, but oh, Beckett, I’m so excited. I’ll probably cry the whole time, but you need to know that I am kind of a cry-er, and you might just get to see that compassionate side of me your whole life. But they will be tears of joy, tears of thankfulness to our God and Creator who made you ever so perfect, just a 2 lb. 2.26 oz. version of perfect. You have a story little boy. I love you more than you’ll ever know. You’re a fighter, Beckett Thomas Gramkow, and just know that when mama can’t be there with you at the hospital, Jesus is holding you in His hands, and He’s holding mama too.

Love you,

Mama

Should I stay or should I go now?

As all parents Mandy and I will have countless decisions to make in Beckett's care in the coming weeks, months, and years. The biggest decision we have faced in his care is in which hospital we want to keep our son.

Beckett was delivered in Harris hospital downtown. Right across the street from Harris is Cook Children's hospital.  Harris has a level 3 NICU (just like Stormont Vail where Ellie was born). Unlike Stormont Vail, Harris does not have all private rooms. Beckett currently shares a room in the Harris NICU with four other babies. Cook Children's hospital recently build a brand new building with a NICU containing all private rooms. Admittedly, this is the single biggest factor swaying us to Cook's.

We have prayed for discernment and renewed trust in God over this decision and we want to gather all the facts before deciding. To that end, we toured the Cook Children's NICU today. They certainly have all the amenities. Similar to a typical adult hospital room, each baby's room has its own TV, recliner, and couch that folds out into a bed. Each room also gets its own bottle warmer for mommy's milk. They also have a parent's lounge complete with fridges, showers, and a laundry room. It's basically a Ronald McDonald House inside of the NICU! Granted, we wouldn't get near as much use out of this as we would have with Ellie. But I think it's amazing that they have this. They've also got programs for siblings, and the minimum age for sibling visitors is 3 years old. (In case you weren't counting, Ellie is three years old.)

We are also blessed to have several friends with connections at Cook's who have offered to pull strings for us in order to ensure that Beckett would be able to transfer. I would like to say that we greatly appreciate this. It is yet another example of God's provision for us through unexpected acts of compassion. Thank you.

On the other side of the street, Harris is a very good hospital. Beckett's neonatologist, Dr. Grubbs, has been extraordinarily patient and accomodating with us throughout this whole process. He explained to us some of the pros and cons of each hospital. He pointed out that sharing a room with other babies puts Beckett closer to the nurses and puts us closer to other parents like us. The other day the nurse came and lowered his bed so she could have a direct line of sight to his monitors while she was working with another baby.

We think very highly of Dr. Grubbs. One of our highest priorities for Beckett's care is to keep Dr. Grubbs as his primary doctor. Dr. Grubbs did not want to be the reason we chose to stay or to transfer, so he promised he would arrange to be Beckett's primary doctor even if Beckett transferred. He originally said that this would not be possible, so we know that he is bending over backwards in order to offer this.

It seems there are a lot of people at Harris working very hard and making accomodations so that our needs and Beckett's needs will be met in the coming months. The nurse manager is no exception. When she heard that physical space was a concern she immediately offered to move Beckett to a different location within the NICU that would offer us more space and privacy. She also told us about upcoming policy changes that will offer us more freedom in our NICU visits.

We weighed all the factors. We considered even more details than I shared here. Naturally we want what's best for Beckett and our family. In the end we decided the best place for Beckett in the coming months is Harris. When it came down to it, being able to have the additional space and privacy at Harris made a huge difference. We believe that the quality of care would be excellent at either hospital. And we are amazed at God's provision of not one, but two hospitals that could handle Beckett's care.

Cook's has several specialties that Beckett doesn't need right now. "Normal" preemies and micro-preemies like Beckett are not specifically among the formal focused groups yet. Since Harris delivers babies rather than getting all their babies from transfers, they tend to have a large population of preemies and thus more focus on these special little ones.

We also have already begun to establish valued relationships with the doctors and nurses at Harris.  One observant nurse even made a last minute plea for us to stay.

I feel very good about our decision. As I said, I am very thankful for those who were pulling strings to ensure that we would be able to transfer. But loyalty for me is a very strong value. Harris has taken care of us every step of the way and I already feel a strong loyalty towards them. It would be very difficult for me to turn my back on that.

I greatly appreciate the approach my wife to making this decision with me as a team. I always advocate keeping your mind open and making a decision once you've gathered all the facts. Mandy exemplified this much more than I did over the course of this decision. She has shown her strength and growth to me over and over in the past week. I would have told you a week ago that she much stronger than she gives herself credit for. Now I know she is even stronger than I gave her credit for.

In the coming days please pray us on our emotional roller coaster ride. There are many difficulties of day to day life as we try to spend our whole day with Beckett while still managing to do all the paperwork and make all the phone calls that come with a preemie birth while still spending time with Ellie while still keeping friends and family up to date. I would add getting a good night's rest to the list, but I'm starting to give up on that one. Some of the challenges are unexpected. Even as I write this my wife and I are coming across hurtfulness coming from unexpected people. God has a plan for even this and I find Mandy and I encouraging each other and strengthening each other's faith in ways we never have before.

I will fall asleep tonight with a lot of love in my heart. Thank you all for caring.

What Just Happened?

A poster in the hallway near Mandy's hospital room sums up this past weekend. It features a smiling young couple with their healthy looking baby boy crawling across their living room. That's not the part that describes this weekend. The poster reads:

8:14 PM

The exact moment we went from expecting in three months to not knowing what to expect.

That poster hit hard for me. With Beckett there was no exact moment like there was with Ellie. (I'll never forget that morning just over three years ago hearing the doctor utter those words "We've got some serious labor issues here.")

This time around had a very different progression. When Mandy went into the hospital (Harris Southwest hospital near our house) Wednesday night, I didn't even go with her. We decided it was best for her to go get checked out because she had been experiencing what she believed (correctly) were contractions. We had gone to the ER a few weeks before under similar circumstances and they sent us home with no serious concerns. I thought this time would be the same. I thought.

I was surprised and hour or so later to get a call from my sobbing wife telling me that they wanted to keep her overnight for observation. I stayed home from work to watch Ellie and a friend's son, which Mandy had planned to do. I wasn't sure when they would discharge her so I had another friend come watch the kids while I went to visit Mandy in the hospital. They couldn't measure her contractions with their equipment since her uterus was too small, so they weren't 100% sure they were contractions. They discussed a couple other possibilities and sent her home with a prescription for Procardia to suppress the contractions. They also gave her a steroid shot for the baby's lungs. Now you might think at this point I would have come to terms with having another micro-preemie. You'd definitely be wrong. They explained that it was a just in case measure that would help the baby's lungs regardless of his birth date. I filled the Procardia presciption, came home, and the crisis was over. Or so I thought.

About the time she was to take the first dose of Procardia she was ordered to return to the hospital. She had called the doctor a few hours after discharge since her symptoms progressed. Her contractions were spaced 2-5 minutes apart usually lasting just over 20 seconds. (We of course downloaded an Android app for that.) The doctor had told her that more regularly spaced contractions lasting 30-45 seconds would be more of a concern. He had predicted the future. She called back to tell him the contractions were 3 minutes apart lasting 30-40 seconds and more painful. He replied that she had earned another night in the hospital. In hindsight, he never specified which hospital.

When we went back to the hospital the doctors tried to slow down the contractions with magnesium sulfate. It didn't work. All day the contractions had only worsened, never more than 5 minutes apart. She was now dilated to 2 cm, up from .5 cm earlier in the day. We discussed that the NICU at the Harris Southwest hospital can't handle babies delivered before 28 weeks, but the one downtown does. Mandy was not even to 25 weeks. So the doctor informed us that "in terms of viability in this pregnancy, we just aren't there yet." They wouldn't even transfer us downtown. But he would go consult with the doctor downtown and let us know.

I understand that no NICU in the world is a replacement for a mother's womb. I understand that even taking a baby born at 28 weeks and nursing her into a healthy happy little girl is a miracle of both God and modern medicine. And I understand that you have to draw the line somewhere, some babies just can't be saved. But when it's your baby, none of that matters.

I said a quick prayer for viability and prepared my speech for the doctor's return. If he stood his ground I would argue that the ultrasounds had consistently measured early, but they resisted moving up the due date. Then I would argue that moving up the due date would get us to viability. Problem solved. Fortunately my speech was not necessary. The doctor returned and said that 25 weeks was the official mark of a viable pregnancy, and Mandy was going to reach the 25 week mark in about another hour. So they would go ahead and transfer us to Harris downtown. Now you might think at this point I would have realized that the baby was coming very very soon. You might be underestimating my stubbornness.

When I arrived downtown they had already given her an even higher magnesium sulfate dose. By this time she was dilated to 3 and the contractions were still 3-4 minutes apart, and were excruciating. The anesthesiologist offered her either an epidural or Stadol. We foolishly chose Stadol which only served to make her loopy and allow her to fall asleep during the short breaks between contractions. By this time I was exhausted and I wasn't the one doing all the work! She progressed to 5 cm and we finally conceded to an epidural. At this point I realized that we would have chosen it sooner except that Mandy and I were both determined that she was not going to have this baby that night. I asked the nurse how long an epidural would last and her response was coy: "Once they get the line in, it will last for the rest of the pregnancy." Now you might think that by this point I would have been forced to admit to myself that we would see our son before the night was through. Well ... I was starting to come around.

But then.

The nurse began talking about breaking her water. My mind quickly sped through confusion and denial. They started taking her bed apart in order to elevate the stirrups. My world had eroded. The doctor came in. My son was born. The NICU staff began stabilizing the baby. This left Mandy and I alone together in a busy, crowded room. I felt strange relief.

I had spent all night progressing through anxiety, worry and fear. My worst fear had been realized. But it had been faced. And suddenly it didn't seem quite so bad. Mandy and I shared our tears. We didn't want to walk the road ahead, we knew it was a long one. But at least it was a little bit familiar.

Please pray for us on our journey.

Announcing Beckett Thomas Gramkow

Many of you have already heard the news, but it is worth repeating. Our son Beckett Thomas Gramkow was born September 23, 2011. He was born at exactly 25 weeks measuring 2 lbs 2.6 oz and 14 inches long. The NICU staff all said he is pretty chunky for a 25 weeker. That actually makes sense when you consider that he was only five ounces lighter than his sister was when she was born. And she was three weeks older! Even so, when I look at him I can't believe how small he is. I don't know if it is because he is smaller than Ellie or because I forgot how small Ellie was. Probably both.

I tried telling Beckett he would be home in no time, but he just rolled his eyes and told me "Come on dad, I know I was born yesterday but even I know better than that."

I said "You're right Beckett. It's going to be a long road ahead. But your mom and I will be here with you every step of the way."