7 quick takes vol. 16: iPhone photo dump

linking up wtih Kelly at This Ain't The Lyceum for some quick takes.

We are reaching waaay back to get you all caught up and to give me the opportunity to post some iPhone photos that you otherwise would never get to see.

//1//

On Mother's Day we took the train downtown to the St. Paul Farmer's Market where Johnny picked out some hanging baskets for me. Going to the farmer's market on Mother's Day has become our thing. And getting me hanging baskets for my Mother's Day gift has also become our thing. Every year I try really hard to keep them alive the whole summer and usually make it until August before they are totally dried up, but this year is going to be different. 

We had a blast riding the train. Shamefully it was our first time, even though it's been running for over a year and there is a stop 3 blocks from our house. We didn't even have to pay because I had two free passes that were included with my jury duty summons. Jury duty, the gift that keeps on giving. 

//2//

We've started potty training! Well, only a little.  If you've ever come to our house or spent any time with us at all you will know that Johnny poops A LOT. This is because of all the intestinal surgeries he has had. No joke, it's about 10 poops a day around here.  So we just figured we should get a potty chair and stick him on there a few times a day to try to reduce to number of diaper changes we have to do. It's been great. The first day he went 6 times in the potty chair.  He really likes to sit there and then peek in to see if anything has come out yet.  TMI? Ok, sorry. 

//3//

Also on Mother's Day, we became godparents again! Johnny's godparents, Ian and Jacqui, welcomed little bundle Archie about a month ago, and we were named his godparents. It's just a big circle of godparents around here.

Johnny really doesn't like it when I hold other babies. He has no idea what's coming. 

//4//

My husband is unemployed! It's ok though, we knew it was happening.  Actually, it was intentional. He's going back to school to become a Physician Assistant. His program starts June 1 and he's taking a couple weeks of vacation before he starts. And it has been SO NICE to have him home.  I just have to remind myself not to get too used to it. 

This is what staycation looks like. 

Actually we have a to-do list the size of Texas that we've been trying to get through.  But there's been plenty of lazy time too.

//5//

In related news, Alex started a blog! Yay! Welcome to my world, sweetie! He will be blogging about what's it's like to be in PA school and will also be doing lots a baking projects now that we no longer have the unlimited access to bread that a bakery manager's family is accustomed to. Find him over at The Baking PA.

//6//

Last week Johnny and I went to visit a friend in the hospital. It's the same hospital we go to for speech therapy, and the same hospital where Johnny was in the NICU. While walking to see our friend we passed right by the entrance to the NICU, the very doors we walked in and out of for 9 days while our baby was there. I haven't been back since we left and at first I was feeling kind of nostalgic, but that quickly turned into painful memories and the welling up of eyes. I don't think about it as much as I used to, but I know I will never forget what it was like to have our baby in the NICU. 

But we have come a long way from this:

to this:

//7//

Speaking of Johnny, he is turning into quite the budding photographer.  He takes even more iPhone photos than I do. In fact, hardly a day passes when I don't find something like this on my camera roll.

Here is one of his most recent selfies. He's still got the cheeks. 

And because there is nowhere else to fit it in, here's a picture of Johnny wearing Alex's socks. He loves to wear Alex's socks. I guess they're comfortable?

Have a great weekend!

//

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Birth Story Pt. 4: The Longest Week

Our brave little guy before surgery

//

After 4 hours of restless sleep I was on my way back to the NICU.  Spending the night away from my baby and husband had been agony and I was anxious to be with them again, but I walked very slowly through the hospital, my left knee was very weak and I didn't want to fall again.

I got to our room shortly before the doctors and surgeons did morning rounds.  We were hoping to hear that Johnny would go into surgery that day.  But because his condition, while serious, was not life threatening they were going to wait until the next day to operate.  This was frustrating to hear.  We didn't want our baby to be in pain any longer than he needed to be, and we also wanted to get surgery behind us as quickly as possible so that we could get home and be a family.

We did at least get a more complete prognosis for Johnny.  He would have this first surgery to create a colostomy so that he can pass stool.  That meant Alex and I would have to learn how to care for an ostomy.  Then at around 6 months of age Johnny will have a second surgery to create an anus and hook his colon up to it.  He will still use the ostomy for up to 3 months after that to let the new anus heal up.  Then there will be a third surgery to close off the ostomy as well as the fistula between his colon and urethra.  The surgeon told us  that Johnny will never have perfect bowel control and it's something we will have to help regulate with diet, medications and possibly a few other operations as he gets older.  It was very daunting to think about not only learning how to care for an infant but also dealing with a major medical appliance on a daily basis.  It was a complete unknown and at the time seemed like an insurmountable feat.

We also learned an inperferate anus is a birth defect that is commonly associated with other birth defects, together they make up a syndrome called VACTERL Syndrome. Vertebral,  Anus, Cardiol, Tracheal, Esophageal, Renal and Limb disorders that can often occur at the same time.  They wanted to check Johnny for all the other possible defects.  It was obvious that he didn't have any deformities in his limbs, and the trachea and esophagus were both functioning normally.  They saw on his initial x-rays that there were some anomalies at the base of his spine, so that would need looking into.  They also ordered a cardiogram of his heart, and a kidney ultrasound to be done after surgery.

After the doctors left  our room I looked at my phone.  I had a text from my mom, "have you pumped yet?"  At the time I was so distraught and distracted that I didn't care if my milk came in or not.  But I am so grateful to my mother for pushing me and reminding me to pump, because it would be  4 more days before I could even attempt to breastfeed Johnny and despite the delay and separation I did not have a problem with my supply. That day I started a rigid schedule of pumping every two to three hours. There was a freezer in the NICU for breast milk where we stored it until Johnny could use it.  (He was getting his nutrients through IV fluids until his intestine had an outlet.)

We decided we wanted to have Johnny baptized before going into surgery.  Even though it was a relatively low risk surgery we wanted him washed with that grace and welcomed as a member of God's family. Our priest was free that morning and so were Johnny's godparents.  So they all came down to the hospital along with my parents.  The NICU only allows four visitors in a room at a time, including parents, but they made an exception for us on this occasion.  We would have loved for Johnny to have been baptized at our church, but our little NICU baptism was really quite beautiful.  It was like a healing balm on our wearied souls.  A welcomed moment of calm in the middle of uncertainty and anxiety.  Along with the baptism our priest administered the Anointing of the Sick, and a blessing for new mothers and babies. Afterwards we felt refreshed and that we could better face what was coming next.

before you judge my appearance, remember what I have just been through. 

Johnny with parents and godparents, Ian and Jacqui.

After the baptism Johnny's godparents stayed to visit for a while.  It felt like it had been ages since we had done something as normal as hanging out with friends, and it felt great! Then, shortly after Ian and Jacqui left, we got a call.  Jacqui (who was 36 weeks pregnant) had just felt her water break! We were in the middle of our big adventure and now they were just beginning their own.  Later that night we got word that they had had their own little boy! We love to reminisce about how the last thing they did before having their baby was come to our babies baptism.  

We spent the rest of Saturday holding our baby, or at least holding his hand through the window of the incubator, pumping (just me) and trying to remember to get meals.  It doesn't sound like a lot of activity but by the end of the day we were exhausted.  It was then that I noticed my left leg was quite swollen.  Postpartum women are at risk for blood clots, and having an epidural puts you at higher risk.  We asked Johnny's nurse to take a look and she thought my left leg felt warmer than the right.  So we decided we'd better go to the ER.  At least it was just down a floor and few hallways over from where we were! Johnny's nurse also called for a wheelchair for me. She said she sees it all the time, mama's who have just delivered are so worried about the babies in the NICU that they forget to take care of themselves. 

So there we were, Saturday at around 11:00pm, in the ER.  I thankfully did not have a blood clot.  But my blood pressure was elevated.  The doctor I saw thought it was probably just stress related (ya think?) But that I should follow up with my GP in a couple days. Thankful that I was ok, Alex wheeled me back to the NICU. It was now 1:00 am, so I decided to stay at the hospital instead of going to my parents.  Alex and I got cozy on a fold-out couch that was about the size of a twin bed, and had yet another fitful night of sleep.

The next morning we waited anxiously for Johnny's operating time.  When it was time for him to go we kissed his little hands good-bye and they wheeled away his incubator.  I sat down on our "bed" and cried. After a few minutes Alex suggested that we do the liturgy of the hours.  This was the reading from morning prayer that day. 

Praise be to the God and Father of our Lord Jesus Christ, 

the Father of compassion and the God of all comfort,

 who comforts us in all our troubles, 

so that we can comfort those in any trouble

 with the comfort we ourselves receive from God.

 For just as we share abundantly in the sufferings of Christ,

 so also our comfort abounds through Christ. 

2 Co 1:3-5 

It never ceases to amaze me how our Lord will find a way to tell us what we need to hear.  After we had our miscarriage someone from our church told me that God would use that experience to minister others. Within a year two close friends lost babies of their own.  Being able to sow seeds of comfort made my own suffering so much more redemptive.  I do believe that the Lord will use us again at some point to minister to others who are experiencing the same difficulties we went through with Johnny.

Surgery lasted only about 45 minutes! Then he was back in his room with us. He had a big purple blob on the side of his tummy (which, by the way, already looked much less distended) which was actually his intestine.  It was still too swollen to be fitted with the ostomy bag, so it was just covered with some gauze. Surgery had gone very well, he was still on a breathing machine, and they would wait until he started breathing on his own to take him off of it.  But as soon as that happened and he was fitted with his bag then we could work on feeding him! 

It took Johnny about 24 hours to come off his breathing machine, which is much longer than we expected. And even after he was breathing on his own it took a long time for the effects of the anesthetic to wear off, so he was very sleepy.  The number one goal now was to get him eating on his own so that we could go home.  I always thought breastfeeding would be easy, it looks like the most natural thing in the world.  But it is hard, and frustrating, and takes a long time to prefect. There I was holding Johnny, the lactation nurse was trying to coax his mouth open, one nurse was holding a pillow under Johnny, another nurse was shoving my breast into his mouth, it was really just comical how many people it took to breastfeed him.  And Johnny would just fall asleep.  Alex had a little more success giving him pumped milk in a bottle. He would strip him down to his diaper to try to keep him awake.  He took a little, but it was a struggle.  I had wanted to breast feed my baby so badly, but it seemed like it was never going to happen.  I was resigned to Johnny being bottled fed if it only meant that we could go home. 

On Wednesday, almost a week after he was born, the IV line that had been in his head blew out.  So his nurse put one in his left hand.  A few hours later that IV blew out.  So then she tried the right hand, and that one lasted only a matter of minutes.  Our nurse really didn't want to put another one back in his head so she suggested we try without one for the night and see if he would pick up on his feedings. If not then they would feed him through an NG tube.  I think having him off IV fluids finally allowed him to develop more of an appetite because that's when we turned a corner with breastfeeding. All of a sudden he just got it! He was latching, sucking and swallowing! That night I cried again, this time tears of relief that something had finally gone right.  Being able to breastfeed Johnny is such a blessing.  After all our turmoil and separation I count it as a precious gift from the Lord. 

Little by little he was taking more from the breast and less from the bottle.  Friday morning they took out his NG tube and he was eating all on his own, and he was gaining weight.  The nurses were beginning to wonder why we were still there. So were we! Then finally on Saturday June 8, after being in hospitals for 12 days straight, we got our discharge and were going home.  After packing up our things Alex had to make four trips out to the car.  It was amazing how much stuff we had accumulated while we were there! As we were leaving many of the nurses we had met throughout the week were there waiving us off.  

We were going home--

with

our baby! With

our

baby  I couldn't believe it, and I couldn't stop smiling. That first week of June had been so cold and rainy but Saturday June 8 was beautiful and sunny.  Everything was so green and alive and flowers were blooming.  It was a perfect day. We stopped by our church on the way home and took Johnny in to offer up our thanks to the Lord, for our baby and for seeing us through that long, long week.  I said before that the most triumphant moment of my life was when Johnny was first born and I first held him to my chest, and it still is.  But a very close second was when we carried him up our front steps and brought him into our home.

shhhh! Nap time!

Post-op. Still on the ventilator. The blob above his diaper is his intestine. 

New ostomy bag. And less wires!

Johnny does not like the NG tube.

No more wires, just cozy baby!

Nap time with Papa,

Kisses from Papa.

Finally going home.

Birth Story Pt. 3: Something's Not Right

Our room was so quiet and calm.  It didn't even seem like the same room I had delivered in.  We spent most of that first day just resting and trying to get nursing established.  Johnny was not latching on; a lactation specialist visited us several times to work on it, but his little jaw was just clenched shut.  Because he hadn't eaten much his blood sugar was low and they wanted to give him some formula.  I was reluctant to give him a bottle until breastfeeding was well established, but I did want him to get some calories, so we finger-fed him some formula. He took a little, but mostly was just sleepy. Family and some friends came to see us and we proudly showed off our calm little baby who would let anyone hold him.

We were given a sheet to document all of Johnny's activity the first couple of days; feedings and wet and dirty diapers. There were many feeding attempts recorded, and we had seen several wet diapers. That first night Johnny woke up crying twice, at 1:00 am and 4:00 am, and each time I was able to nurse him.  But those were the only successful attempts I had.  And we were still waiting for his first stool. At some point Alex saw a streak of poop in his diaper, but the nurse said that was not enough to count. 

All of Friday Johnny slept.  We woke him to try to feed him, but he wasn't taking anything.  All the nurses assured us that some newborns are just very sleepy the first day or two.  I had never had a baby before, so I had nothing to compare him to and wasn't very concerned. But my mom, who had spent most of the day with us, was starting to worry. I later found out that when she went back to my dad's office that afternoon she broke down crying, saying "something's not right, I just know something's not right. He should be waking up to eat!" 

We learned how to give Johnny a bath.  When the nurse was showing us how to clean his....you know, boy parts, she noticed a little poop under his foreskin.  She suggested that perhaps there had been meconium present and birth, and it had gotten stuck under there, but because the delivery had been so chaotic and bloody everyone just missed it.  She cleaned him off and we didn't think anymore about it.  But then a few hours later Alex noticed another poop streak in his diaper, and this time he realized it was in the front.  A new nurse was on duty and we showed her the diaper, she took a look at Johnny and there was more meconium under his foreskin.  She thought this definitely was not normal and that he was beginning to look rather jaundiced, so she had the N.P.on the floor take a look at him. 

All this time I had a mounting sense of worry, but it wasn't until they wheeled him away in his little bassinet that it hit with over whelming intensity; there was something wrong with our baby. Alex and I followed behind to the special care unit.  I had hardly been on my feet at all since the epidural wore off, and my legs were weak and unsteady.  One of the nurses told me that I might want to just wait in our room, that they would be throwing around a lot of medical jargon and that it might be confusing.  That didn't matter, I wanted to stay with our baby. I was trying to hold it together, but seeing my little baby, naked, under the bright lights, being poked and prodded by the N.P. and the Resident on duty was too much.  They said he was jaundiced, lethargic, his belly was distended, and there was an absence of bowel sounds.  The N.P. said she was going to probe his rectum to try to get some bowel activity going, but every time she tried she met with resistance.  After turning him and carefully examining his little bottom she discovered that there was no rectal opening. She looked at the Resident and said "fistula?" 

I didn't get to find out what a fistula was until later. At that moment they started making phone calls to transfer Johnny to Children's Hospital.  And they called my Dr. to see if I could be discharged early to go with him.  I had not showered since Tuesday (and it was now Friday) so I decided the best thing for me to do was to get cleaned up and ready to leave.  Alex called my parents to come down and wait with me while he stayed with Johnny.  I stumbled back to our room half blinded by the tears that I could no longer control, and carefully got into the shower, hoping my weak legs wouldn't give out on me.  The hot water felt good, but it felt better to be alone and give into to the heaving sobs I had been suppressing.  There in the shower I allowed myself to be mad and to feel doubt.  Why was God letting us go through this? Hadn't we been through enough already? I thought of Scripture telling us that we will not be given more than we can handle and that "suffering produces perseverance; perseverance, character; and character, hope." But I was tired of suffering, tired of being tested, tired from over two years or persevering, and I was running out of hope.  And yet, in a tiny quiet part of me, I knew that I was going to get through this.  I had no idea how, but I knew that I would. 

I got out of the shower, somewhat calmer, and began to pack up my things. My parents were there now to help me, and Alex came back to our room to give an update. Johnny had an inperferate anus, that means there is no anal opening.  He also had a fistula, or a connection, between his colon and urethra.  He was unable to pass stool through his bowel and so he was completely backed up and his body had been trying to pass stool with his urine. Alex's dad is a pediatrician, and told Alex over the phone that Johnny's situation was not life threatening, and that as far as birth defects go it is pretty easy to deal with, he would need surgery to correct  his anus and intestine and to close off the fistula. It was reassuring to hear this, but I still had no idea what was going on.  They were loading him into a transfer unit to take him to Children's.  I suddenly realized I had not given him a kiss before I left the special care unit. I told Alex that I wanted to kiss him before he left. So Alex went to figure that out. In the meantime my mom and the Resident were trying to get me to pump so that my milk would come in.  I remembering being so annoyed with them and being so incredibly distracted that I didn't care if my milk came in or not.  But I did sit down and pump a little.

Then they brought Johnny in for me to say goodbye.  In my previous post I said that pushing Johnny out was the hardest thing I had ever done, but I am taking that back.  Saying goodbye to him, while only being able to touch his little hand, was the hardest thing I have ever done, and by far the worst moment of my life.

Alex rode with Johnny in the ambulance, I stayed behind to wait for my discharge.  My sister joined us at the hospital.  She had been on her way to have dinner with some friends when she got a call from my mom that something was wrong with Johnny.  She sat in her car, in the parking lot, crying and feeling like she couldn't enjoy an evening with her friends while we were going through such a crisis, so she came to lend support.  I don't know what we would have done without our family and friends who came around us and held us up during that incredibly difficult time. 

When I was finally all discharged I was wheeled out of St. Joseph's Hospital and my mom drove me the 5 blocks over to Children's Hospital.  All I wanted was to be with my baby and my husband.  When we got to the NICU they had Johnny set up in an incubator.  The rounding Resident came by and told us the tentative plan for Johnny.  I didn't hear anything she said.  I was completely crushed, feeling like I had entered a long dark tunnel and I could see no end.  When the doctors left Johnny's nurse, a very sweet Philippino lady, asked me if I wanted to hold him.  I didn't even know that was possible! She brought a recliner into our room and I took off my shirt and put a hospital gown on.  She took Johnny out of the incubator, carefully trailing a handful of leads, wires and tubes, and I got to hold my baby to my chest.  "This is how it should be," I thought, "this is all we should be doing."  But reality was unkind and we would have to wait a while for things to be as they should.  I told Alex that evening that when we got Johnny home I was never going to put him down. 

It was about 10:00 pm and we still hadn't had dinner, so reluctantly I let our nurse put Johnny back.  I did a little more pumping (and once again was annoyed that people kept suggesting I do so), and we joined my parents in the family lounge for some Jimmy Johns.  I had been avoiding cold cuts throughout my pregnancy and Jimmy John's was one of the things I was most looking forward to eating again, but after forcing down a couple of bites my appetite was gone. 

We decided that I would spend the night at my parents to try to get some rest and Alex would stay on the fold out couch in Johnny's NICU room.  My mom and I made a quick stop at my house to pick up some clothes and my breast pump.  I hadn't realized until then how badly I was neglecting my own postpartum body.  We were walking up my front steps when my left leg gave out and I was down on my hands and knees. I couldn't even get up on my own and I couldn't climb stairs.  Our natural childbirth classes recommended that mothers spend the first week after baby is born in bed, getting up only to use the bathroom and soak in the tub.  That was not an option for me. It was now 1:00 am on Saturday. We got my things, went to my parents house. I pumped, ate a banana, and then cried myself to sleep. 

read next part here