And they take your blood pressure, and you listen to the baby’s heartbeat. Until the baby kicks the doppler.

And nobody says anything about the serious pain you have in your future. The baby and I are marching towards that ultimate end. Yes, we finally get to meet face to face. After the pain.

I wonder if I can skip all the little pointless appointments and just take the tests and then call them on the big day. Because by now I have just run out of pleasant commentary for these appointments.

I remember when all this was new. When I was pregnant with Yanni, I couldn’t wait for my Dr.’s appointments. I couldn’t wait to hear how well the baby and I were doing, blah, blah, blah. Everything was so fresh and exciting back then. I didn’t have to drop everything I was doing, get the little children dressed and race out the door for an appointment.

Back then I didn’t have anything to do, and looked forward to finding out more about the inevitable. The more I found out, the less I knew what birth would be like.

Now I know. Having been through the most nightmarish of births, it’s hard to think of anything else. So I know why I go to be bored out of my mind once a month. After the next visit, it will be twice a month. . . until we meet face to face. From what I remember, Yanni’s birth wasn’t that painful. I remember thinking, “is that all? I could do that again!”

I certainly couldn’t have anticipated Xay’s birth, which happened so fast it was overwhelming, or Esteban’s enormous shoulders, or Yasha being crushed by the whole experience. I wish someone could tell me exactly what to expect. I wish I didn’t have such a big space between Esteban and this baby.

I wish and wish and wish, and ultimately, we march toward the inevitable. And pray we get the prize at the end of the birth tunnel.

Yasha and I still aren’t nursing yet. It is a little heartbreaking to have her reject me. But she is true to form. She is still tense and distrustful of us, but she’s relaxing more day by day.

I started trying to do a modified version of kangaroo care over the weekend. Yasha is much bigger and older than babies they recommend for strapping to your body. I have decided to take a few hours a day to lie skin to skin.

It agitates her at first, but she shows more interest in the breast than she would otherwise. And, sometimes, when she’s asleep, I can stick the nipple in, kinda like a pacifier.

Don’t you love serene breastfeeding pictures? Ours is a fraud, but we’ll fake it ’til we make it.

We are all beyond thrilled, and I must say Miss Yasha sounds a lot less secretion plagued. Halleluia! As I type (and, let’s be honest, pump), Yasha is being lovingly held by her biggest sister. And, most likely, sleeping.

Imagine that, a baby being held.

I’ll write more later- Ms. Yasha calls!

If you’ve been following the Yasha story, you’ll remember that the last time we tried to spend the night with the baby, we were sent home for sleeping.

But now that we’re getting ready to bring her home, Dr. Purdy suggested we do a couple overnights to practice using all her equipment. Curtis and I decided to stay together with her, like it’ll be when she gets home, anyway.

Daddy graciously agreed to stay with the other children at our house. They enthusiastically made the couch bed for him, and he played a few games of scrabble, Xay’s latest passion, with the big kids.

Curtis and I got to the hospital after 9, and basically took over her care. While I pumped, Curtis changed Yasha’s diaper and took her temperature. We had Greg as a nurse last night, and he told us a slightly different way to insert the ng tube(feeding tube) down Yasha’s throat than the girl nurse had taught me earlier that day.

I had inserted the hospital tube, but since we are preparing to take Yasha home, we had to switch to the home equipment, which is slightly different. Curtis volunteered to put in the new tube, but it was easier said than done. The tube is softer than the stiff hospital tube, and it kept curling up on itself. After various attempts to hear the air inserted in her stomach, Greg reinserted the tube until he was able to both pull back some aspirate (undigested milk Yasha’s belly), and he could hear air being pushed in her belly with a stethoscope.

It would appear that my *job* at the hospital has provided me ample nurse training, besides just nurse gazing. (hence all the technical terms bandied about in this blog)

Greg was pleased with the lesson we were supposed to learn from that ordeal, but Curtis and I were left feeling pretty unsure of this procedure. (Mental note: invite Miriam over for another lesson!)

I was put to the test showing everyone in the room how to hook the baby up to the new equipment. I had had three demos earlier in the day, and was trying to remember how to shut off the alarm on the apnea monitor, as well as how to load the feeding pump. Thankfully, the machines were pretty straightforward, and the airway salesman, Jim was a very good teacher.

It was after 11 by the time we finally took our show on the road. Carol, our case manager, had booked us a room in the pediatric ward, instead of the usual (broom closet sized ) room usually reserved for a parent overnight.

Greg was nervous, sure he’d forgotten something important, and Curtis and I were exhausted.

As soon as Greg left the room, Curtis started unstrapping Yasha. “I have waited so long to hold you with no cords,” he cooed to the baby. We found that we couldn’t easily unhook the feeding machine, so we unplugged it and dragged it over to the chair so father could cuddle daughter.

Yasha was fussy, and Curtis was sleepy. He dozed on and off, while Yasha took a while to settle down. Curtis didn’t want to fall asleep holding the baby, and he wasn’t sure he was calming her down. I had dozed for 5 minutes on the bed, and was now wide awake, listening for the baby’s breathing.

We switched places, and Curtis promptly fell asleep. I held Yasha, tears streaming down my face as I went back over her birth and hospitalization. I was overcome with gratefulness to finally hold her in my arms at bed-time. She had relaxed, and fallen asleep in my arms by midnight–TIME TO PUMP! TIME TO PUMP! TIME TO PUMP!

I carefully put Yasha back in the crib, hooking her leads back on, plugging the feeding machine back in, and then I pulled out my breast pump and got to work.

Pumping usually makes me a little dizzy; especially at night, so I stumbled over to the bed after washing the bottles and equipment and putting the pumped milk into the cooler.

I slept for a little while, until Yasha’s noisy breathing, indicating that she was waking up, woke me up. Curtis was also awakened by the noisy breathing from time to time.

We don’t want to over suction her, so we just listened to it. I would get up from time to time to make sure Yasha was ok. Her raspy breathing turned to wheezing. We still didn’t think it was time to suction Yasha.

Greg came in around 1ish, asking if we were ok. He put a band around the baby’s ankle–a security device, I found out later. He started melting frozen breast milk in a container of hot water.

At 2ish, I changed Yasha’s feeding bag.

Finally, around 3, the breathing got loud enough for me to run the suction machine in Yasha’s mouth. I also went shallowly into her nostrils. Her breathing settled down. I had to pump again, and had planned to pick the baby up after I finished.

I smelled something. “Curtis, did we bring any diapers?” Curtis mumbled “I don’t think so,” and jumped up to run back to the NICU to get some diapers. He came back with Greg, diapers and wipes. Greg asked if everything was ok. I told him that I’d suctioned her mouth.

Yasha put herself to sleep around 5, and I fell asleep, too. The Apnea monitor went off at 5:50, and woke Curtis and me. I looked and it said that she’d stopped breathing. I got up and went to the bathroom, and the monitor went off again while I was there. It screamed for a longer period, and then held its piercing pitch until Curtis got up and turned the machine off.

“She was breathing,” he told me. “I was standing right there, watching. I don’t know what’s wrong with that machine.” Then Curtis was up for the day and proceeded to get dressed. I turned the machine back on, and was sitting there looking dazed. It was after 6, TIME TO PUMP, and I wondered what it would be like for the male nurse to walk in on me pumping, when Greg came in.

Yasha sneezed all over her face, squirting secretions everywhere. I asked Greg if she’s ever done that, and he replied, “Only when she needs suctioning.” I decided to go ahead and really suction her, and for the first time, with Greg’s help, was able to get the tube down into her right nostril. He informed me that she’s depending on us to keep her suctioned on his way out the door.

I decided to hold Yasha after I pumped again. While I was pumping, I heard Yasha sounding really congested. I stopped before I was really done, and went over to hold her.

I could see why the staff is so big on suctioning her. It sounds like if you could just get deep enough, you could get rid of all the gunk. But I had just suctioned her, and I suspected she needed to be picked up and worked with.

Yasha was wide awake, Curtis was gone, and I was sleepy and cold. I held the baby in the sling and tried to calm her down. She was really shook up by this point, shivering from time to time, and fussy. I massaged her gums. She screamed. I gave her a pacifier. She spit it out. And she continued to cough a little. I wiped her mouth, and worked with her sucking some more. Pretty soon, Yasha was gulping and swallowing. BINGO! That’s what’s ultimately going to control the secretions.

I was praying, talking to God about how I didn’t think that average babies were always sucking and swallowing, when I thought that Yasha hasn’t had any of that kind of experience in her young life. The picture of her already being healed, and now having to be trained to suck and swallow came to mind, and I pressed forward.

By 7:40 ish, Yasha was relaxed and sleeping. I was also relaxed, and dozed a little until that stupid monitor went off. Again, she was breathing quietly, shallowly, and the machine went off. It has no problem with her noisy breathing, but won’t accept the quiet breathing.

Gretchen, the day nurse came in around 8:15, and we moved our stuff back to the NICU. I felt like death eating a cracker. I don’t ever remember being so tired. Yasha was asleep and peaceful. AMEN.

Can’t wait to get her home.

I nursed all the children well into their second year, and I really enjoyed that time I had with each child alone.  I remember when I fell in love with Xay.  His birth was difficult; we were both exhausted for two days. Then, on the third day, while nursing him, I fell fiercely in love with this baby boy.  I ended up nursing him for two weeks shy of 2 years, and he has been one of my favorite running buddies ever since then.  I have similar stories to tell of falling in love with nursing babies.

When Esteban was born, I tried to nurse him right away.  I had heard that that was a luxury of a home birth; you could nurse immediately.  Ready, set, bond!  Well, Esteban wasn’t interested in nursing right away.  So, I waited for him.

When Yasha was born, I thought she’d want to wait to nurse, too.  I was wrong.  She started rooting around within minutes of birth.  Curtis and I had to maneouver around the short umbilical cord and the baby to get my nightgown off so I could nurse our brand new daughter.

Yasha stayed on the left breast for quite some time.  I couldn’t switch her to the right side because we were still attached, and her cord was short and sensitive.

Then, we had the emergency with her stopping breathing, and rushing to the hospital, etc.

Yasha has not nursed since then.

I was horrified at the hospital when I realized that I couldn’t nurse Yasha any time soon. First, Dr. Pierucci was concerned with acifidity. Apparently, Yasha’s body went into this condition when it was denied oxygen.

It took about 5 days before that condition went away, and Yasha was put on a tube feeling of breast milk. When this started, Yasha was still getting nutrition from the IV.  Soon, the IV was removed, and the breast milk feedings got bigger and bigger.

Around the time of the IV removal, Yasha started throwing up.  I don’t know if that’s when the ‘secretions’ appeared, but that’s when all kinds of talk about secretions, and what caused them started.  She’s been on continuous feeding in an attempt to get a handle on this situation.

Seeing the baby gray and not breathing on our bed was horrifying. I asked God if I could have this baby, but I had a hard time shaking that image. Pumping breast milk was a faith move for me. I had to believe that God would let me have Yasha in order for me to save my milk for her.

I always looked at pumping as creating a milk supply for when Yasha would nurse again.

The way the Dr. talked about acifidity, I got the impression that it would be forever before my baby could even have breast milk.  But it all changed on a dime, and before I knew it, I had to take an HIV test and get all these hospital issued bottles and labels, and do everything the hospital way.

I resented the HIV test, but Christie helped.  She had to do the same thing two years ago when Jessie was born.  It was painless enough, and the next time I came into the nursery, I brought bottles of milk for Yasha.

Usually, breastfeeding reminds me of our old cat, Ntsoke.  She had kittens one December, and she always had a trapped look in her eyes when it was time to feed them. Pretty soon, she started standing up in the middle of a nursing session, and before you knew it, the kittens were competing with her for the food dish.

I know how Ntsoke felt. You are just lying there, (or sitting), feeling the baby tug at your life essence.  You feel ravenous and thirsty, and slightly dizzy when you finally break the suction and do something besides nurse.

Pumping is more like labor.  There’s that dread that rises at the base of your neck.  A pain is coming. . . BAM!  TIME TO PUMP! TIME TO PUMP! TIME TO PUMP!  It’s just as relentless as I. Need. To. Push!

I make sure the shield things are clean, the bottles clean and empty, and I hook myself up to a machine.  I feel so like a cow. Why do we do that to the poor lactating animals?  But I do understand why their schedule is so regular.  Because it gets more uncomfortable when you have to wait.

I must have been engorged for two weeks this time.  At least that’s what it felt like.  I thought I’d just be engorged until I could actually nurse Yasha.  Then, miraculously, the engorgement went down.  I feel like a normal woman in between TIME TO PUMP!  TIME TO PUMP! TIME TO PUMP!–which is every three hours.

I would be so grateful to feel like the cat again.

And, if I’m being honest, I am also very grateful to have milk to pump every three hours. I stepped out in faith, and God brought my milk in on the second day, just as if I had been nursing the baby.  He established my early pumping schedule, before it settled into the three hour pattern.  And, for the first time in my life, I am pumping in a large volume.

I usually get 2 ounces of milk from one, and 1 ounce from the other.  Sometimes I get more, sometimes less.  But the thing is, in the past, I was only able to scrounge up 2 ounces from both breasts combined, on a good day!

Whenever I tried to pump so that someone else could watch the baby, the baby would run through that sad amount of milk and be screaming and miserable until we returned.  The feeling was mutual.  I’d run in the house and grab the baby, usually asleep, exhausted from all the crying, and force a flaming, engorged breast in their direction.

Now, the freezer overflows with bottles.  We took 30 down to the basement freezer, and I take at least 20 to the hospital once a week.  I push concern that I won’t be able to produce enough milk to the back of my mind.  Pumping 7-8 times a day produces a lot of little bottles.

Something tells me that I’ll have a few left over for a date night after Yasha is home and nursing.

Anyway, Yasha was put back on the canula last night because of the blasted secretions. If I never hear that word again, it will be too soon! She was still on it today, but when I left the hospital just before noon, she was breathing room air from it. If the nurse could suction enough secretions, Yasha could go off the canula.

Yasha has OT. I think it’s occupational therapy, not physical therapy. From what I remember when Mommy had both, I think OT has to do with smaller movements, like hands and arms, whereas PT has to do with walking, etc. But don’t take my word for it. . .

Denise, the Occupational Therapist came and examined Yasha last week or so. She said that the baby grips her fists too tight, and she doesn’t like that she tucks her thumbs in. I had thought how clever to have a baby born knowing how to do that–shows you what I know. Denise told me to carefully pull her fingers out and then hold her thumb up and out, massaging the muscle at the base of the thumb.

Try doing that while holding the baby just so that her air passage is opened perfectly, and she is screaming, and closing her eyes, face turing red. . .Now we are glad to hear that she can cry, in fact, we want her to cry long and hard like the other children did, but I can’t tell whether she’s in pain or angry here.

I had thought that by Friday her hands would have been loosened up enough that she wouldn’t need splints. But, alas, Denise and her assistant were making splints for Yasha when I got to my *job* Friday morning. Yasha gets to wear these lovely splints for four hours, then have them off for four hours, and so on. I was there long enough yesterday to take them off, and her hands were pretty open then.

Another thing to work on is the fact that Yasha likes to turn her head to one side exclusively. So, Curtis and I get to find creative ways to get her to turn her head to the other side. We hold her on the opposite side, and when she turns her head, we gently hold it in the position we’re trying to encourage. She is a strong, feisty baby. That is both encouraging, and challenging.

I think the improvement in this area is very slight; she is looking at us on this new, uncomfortable side, but she really relaxes better on the other side.

Yasha also has a tight jaw. (Boy, she sounds more like me by the second!) The treatment for this is reaching in her mouth and massaging her gums. I have seen the most improvement here. Her jaw was looser today, and she even had her mouth open all by herself. We are able to work with a pacifier from this position, and I was able to get the bottle in her mouth for the swallow study from working with her jaw. She sucks your finger and the pacifier a little bit when you work on this, which is huge. It is encouraging to see progress in this area.

The other occupational therapy exercise is pulling her arms up. Yasha tends to hold her arms very stiff–(I feel her)–and pulling her arms up supposedly relaxes this. She howls about this exercise, too, but I alternate it with games of drive the fire truck, the wheels on the bus, and Curtis’ game, 1, 2, 3, 4. She doesn’t complain as much when I make it a game.

I also try to work with her legs, but what with all the leads and pulse oxygen cords, it is harder to get at her legs. Not to mention the fact that she prefers being swaddled.

So, the hours at the hospital fly by. I play OT with the baby. I annoint her head with oil and pray. I sit and marvel at her beautiful baby face. I try to calm her and help her fall asleep. I fight with pulse ox readings on the beeping monitor. I change her diaper. I give her baths. I go pump milk. I listen to doctors’ orders and recommendations. And I get a glimpse of NICU nurse life.

Too bad I can’t blog while I’m there. . .

Well, it’s after 3. Time to go back to work.

Update: When I went back to see Yasha in the 4 o’clock hour, she was not wearing the canula. She was also breathing on her own when Curtis and I returned at 11:30 PM. She was still breathing on her own when we left after midnight! Halleluia!

The word “tarry” dropped in my spirit. I knew that the word meant “wait,” but I looked it up on dictionary.com to be sure. It’s an old word, a KJV Bible word that not only means ‘wait,’ but suggests a layover in a journey.

I was immediately filled with a sense of calm. During the whole Yasha saga I have been in a hurry. First for her to be born, then for her to get healed, to get out of the hospital. The word ‘tarry’ signaled to me to wait for Yasha to improve, and to be patient.

That was the first day we had tall Terry as our nurse. And there was another Terry in the nursery–hence the reason our nurse was called ‘tall Terry.’ So the word ‘tarry’ was reinforced over and over—for the three days in a row of Terry’s shift.

Meanwhile, the doctors are ready to move–they’re talking about surgery so we can take Yasha home. They’re talking about feeding tubes and equipment in our home.

We had a care conference on Wednesday. All the doctors that have been treating Yasha were represented: the neonatologist, Dr. Purdy, the neurologist, Dr. Sweet, and the surgeon, Dr. Downing were there. Lisa, the Social Worker, and Carol, the case manager were also there. Guess who else was there? Terry, even though it was her day off.

We’ve been seeking the Kingdom. We’ve been reading the Bible, doing Bible searches, listening to tapes and CD’s teaching on the Kingdom. We came across the scripture in Acts that says to tarry unitl you receive the Holy Ghost–until you get eundued with power. Hello! like the power to heal the baby?

So in the middle of all this pressure to make a decision to get her out now(!)–Terry is there to remind us to wait.

Curtis remembered other Terrys in his life. Just before he got saved, he worked for a Terry. She was Christian, and left a Josh McDowell book, More Than a Carpenter, out for anyone to pick up. Curtis picked it up and read it. He challenged Terry for believing it, and she stood by Jesus. There was another Terry on that job, too. He would greet Curtis every day with a purposeful “God bless you!” Curtis felt the intent of that greeting, a blessing, daily.

For some reason, these Terrys didn’t get along with each other. I don’t know the spiritual significance of this. I know Christians are supposed to love one another. But both Terrys loved Curtis. And he got saved.

I for one had misjudged our nurse Terry. I had thought she was aloof, but she just had confidence that Yasha would be ok. She ws the first nurse we’ve had to tell us that Yasha was doing well, instead of saying things like, “well. . . , ” or “i don’t know. . .,” or “she’s very sick. . .,” Terry said things like, “she looks good.” What hope that fostered! She was also the first nurse to trust us to take the baby out of the crib by ourselves. It was on Terry’s shift that I gave Yasha a bath all by myself (almost).

Now, when there’s talk and action towards getting Yasha home, we think we’ll tarry until further instruction from God.

Last night, John told us he was surprised that Yasha wasn’t home yet. Julie agreed, looking intense.  We had an invigorating conversation about what Curtis and I have been studying in the Gospels.

John mentioned different phases of the Kingdom of heaven–one of which is the immediate BAM healing that we’ve been seeking.  But then he talked about the mustard seed, which grows almost imperceptibly–that a slow healing is a manifestation of the kingdom as well.

Julie said that she wanted to lay her hands on the baby and get her healed. Curtis and I were getting ready to go visit Yasha, and John suggested that Julie go with us, while he kept their young son.

We stood to pray before we left, and they were praying for the baby’s immediate healing,and I found myself struggling with unbelief.  I prayed for help with my unbelief.  I asked God to increase my faith.  And the verse the Knowltons had just brought up came to mind:  Jeremiah 29.11: For I know the thoughts that I think towards you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.

Suddenly, I was able to admit to the unbelief I’d had since the beginning of this ordeal.  I didn’t think it was God’s will for the baby to be healed.  I believed He had the power, etc. to heal her, but didn’t believe that He would.  Suddenly, that verse told me to stop being suspicious of God.

I already had the peace that if I really wanted something, God would give it to me.  He’d already done that with Curtis, and our van.  I told Him several times that I want this baby.  So, I had peace with that.  I just had unbelief about His will for her healing.

That piece in place, I breathed a sigh of relief.

We met Julie at the hospital, and she patiently waited for the unsually talkative nurse to finish babbling.  Julie prayed over Yasha while Curtis and I prayed as well.  I was hit with a wave of weariness–I know that was spiritual. I was just grateful that we had someone with faith on board.  It didn’t matter who it was, as the Gospels have pointed out in several places.

When Julie finished praying, she said that Yasha would be off the CPAP (breathing machine) the next day.  Curtis and I agreed to this in faith.  Then, as I watched Yasha’s blood oxygen numbers plummet, I was again hit with weariness.

This morning, Curtis told me that Julie had called and said that she’d been up most of the night praying for Yasha, and she wanted to go to the hospital and pray over her again.

We met her at the hospital, and Julie prayed over Yasha again.  Then she told us to keep seeking God, to keep growing our faith. We were growing a shield that would soon envelope the baby.  Also, she said that when you are looking for perfection, it takes time.

Yasha’s blood oxygen levels were dropping.  It was inexplicable.  Then, one of the tubes on the KPAP came loose, and the oxygen levels jumped up.  This happened a couple of times.  And the staff prepared to take her off the CPAP.  I had just been thinking that I didn’t know how she’d get off that machine with her levels jumping all over the place.  No sooner had Julie left than the nurse began to take Yasha off the CPAP.  And I believe she won’t go back on it!

Now she’s on the canula, the last breathing assistance before she’s breathing on her own.  The next big hurdle is nursing. . .