Four pounds and counting

Thursday was a day for change and celebration. Naomi was five weeks old and Mom and Dad had received a phone call filled with good news in the morning. The doctor had informed us that Naomi was doing well. She was digesting and seemed to be having regular stools. She was also IV free! Her feedings were close to her daily calorie needs, so they decided not to start a new IV in the morning. After watching the nurses try to start several IV's one day, I learned that it's better not to stick around to try to help. I'll never forget my daughter's cries and how little I could do to comfort her at the time since she was in an isolette.

Ana and I both arrived at the NICU around 1 PM on Thursday. We were both excited to help with her cares. We noted the board said she was four-pounds and one-half-ounce. Every gram counts in the NICU.

The pre-highlight of the day though, was the grand opening of her isolette. It's basically the Miller Park of isolettes, except it only takes about two seconds to open the roof.

After the grand opening, cares seemed to be effortless. In addition, we found out that we were allowed to pick Naomi up before or after cares and hold her. It was another step towards normalcy.

Needless to say we were elated. No IV, no roof, fewer holding restrictions, and something that Ana knew, but didn't tell me. In my half dazed state laying on the couch one recent afternoon, I thought I overheard the nurse asking Ana if she wanted to give Naomi a kiss. I dismissed it as a mishearing and thought we can't kiss her since we have to wash our hands for two minutes and use foam afterwards before touching her. I found out I was wrong though (as long as I wasn't sick). So with little time for fanfare, I scooped her up and gave her a kiss on the head. I waited 36 days for that kiss. Ana and I try not to over do it now, especially since she is still at high risk for illness and infections, but I sneaked in four kisses to her three.

With all these steps forward though, we hit a snag. By that evening, Naomi was de-saturating regularly. It had been five days since she was taken off of caffeine, and like dad, she was forgetting to breath. Her heart rate never dropped so she wasn't given a ticket for a spell, but it was still concerning. After some discussion with the nurse, Naomi was put back on a low flow cannula.

It was very nerve wracking since Naomi seems to swallow a lot of air without the aid of a cannula. That's why they tried to remove her from it a week and a half ago. So with vivid pictures running through our minds of Naomi's earlier digestive problems, we watched as they strapped on a cannula.

Afterwards, we went home to get some rest. I was worn out from the week and crashed almost immediately. Ana stayed up for the usual pumping routine. We both awoke early though today to make it to the NICU in time to talk with the doctor. After some discussion and relaying of our concerns we decided to put Naomi back on caffeine. She'll still be on a cannula until she is breathing room air consistently and not de-saturating, but we hope it will be removed sooner with the caffeine, rather than later. The consequence of our decision is that Naomi will likely need to wear a monitor for two months when she gets home since they will keep her on caffeine until approximately two weeks after discharge.

Having lived around monitors for a while, we think we will be moderately comfortable around a monitor, at least until the first alarm goes off. We were warned that they are sensitive and the alarm is loud. Looking at the big picture though, we hope it will allow Naomi to be cannula-free soon since we've just made it over the digestion hurdle. Ana's back on the caffeine wagon too. I'll have to quit being so stingy with the coffee around the house.

I'll end this post a video. In most areas, Naomi is acting much older than her gestational age. She's currently training to nurse so she can head home. So far, our best guess for that day is 38 weeks, or approximately four weeks from now. Thanks again everyone for all of your support and help.

35 Days and Counting

It's hard to believe that we've been in the NICU for over a month. It's also hard to believe that Naomi is more than a month old, especially when you still refer to her gestational age (34 weeks).

The past week has been filled with a steady stream of busyness. Naomi has continued to receive increased feedings with relatively few holds. Her biggest struggle seems to be over night, but after some belly time, she usually digests most of her milk. She is up to 7 mL/hr now.

Naomi has also continued to gain weight at a slow, but steady pace. Right now she is currently one pound short of her mom's birth weight. I think mom is planning to celebrate the day she reaches 4-pounds, 12-ounces. On a side note, Naomi does seem to throw a tantrum or two now. It's not quite Uncle Ben worthy, but she is doing her best to get all 3-pounds, 12-ounces into it.

Naomi was taken off caffeine two days ago since she hasn't had any spells. It is another step in the direction towards home. So far she hasn't had any spells, but caffeine has a long half-life, so the true count starts three days from now. If she doesn't have any spells for five days after that time point, she'll have reached another milestone.

Our final hurdle seems to still be digestion. As Naomi's feedings increase they will add fortifier to her milk again. This time though, they are planning to try a different kind since the last kind may have caused all of the problems. We'll never know for sure, but anything we can do to make the transition easier is a plus.

Speaking of transitions, Naomi did finally cut the cheese on her mom's lap. Dad was definitely proud! After another 30-minutes of kangaroo-ing Naomi let two more go. By the time dad got the chance to change a diaper, things were looking good. Hopefully I'll never forgot that a dirty diaper means things are working well.

Last, Ana's friend Danielle came to visit for the week! They both enjoyed the smiles and time together in the NICU and out. It was a fun week of showing off our daughter.

Our current guess as to when we'll be able to go home is around 38 to 40 weeks, which means we will be in the NICU/ICC for another four to six weeks. We'll be happy to transition to ICC when we get a chance and we'll be even happier to take our little girl home. Thanks again everyone for all of the thoughts and prayers. We are lucky to have such a wonderful family and group of friends.

Roller Coaster Rides

Monday we returned to our normal routines after a stressful weekend. Naomi was back up to 7 mL of milk every three hours and seemed to be doing well. She filled her days with stretching, yawning, smiling, and complaining to the nurse when they measured her belly.

The doctor said she looked better and they were hopeful she'd start digesting. She still didn't have many stools though, but that could also be due to the reduced volume of milk.

Tuesday was a different story. Ana was at the NICU all day with a friend and started to notice a change in Naomi. Naomi was pretty sleepy all day, instead of her usual feisty self. During cares at 5 PM, her temp was low and her belly still had a fair amount of milk in it. After starting her next feeding, she was burping and puking up milk, her belly looked distended again, and she was especially lethargic. By 5:30 PM, the nurse had contacted the doctor and so began a long night.

The doctor ordered several blood draws to check to see if she had any infections. She also ordered feedings stopped for the night and an X-ray for Naomi's belly.

Needless to say, we were having a rough night. Once the results arrived, the doctor stopped by to give us an update. The X-ray showed a large amount of air in her small colon and her CRP (measure of inflammation) was slightly elevated. The doctor said her CRP was still within the limits of normal, but she wanted to start antibiotics as a precaution. We would have to wait a day or two to find out about her other tests.  Thankfully, as the night went on, her temp went back up and she started acting a little more feisty again.

Early Wednesday morning, the doctor decided to try a different approach. She would start feedings again, but Naomi would receive 1 mL of milk per hour, continuously. Previously, her feedings were every three hours and were given over five minutes to 30 minutes depending on the volume. We anxiously waited to see how Naomi would respond.

By Wednesday afternoon we found out Naomi's cultures were negative, indicating no blood infection. Her white blood cell levels were also normal. The doctor said she would continue antibiotics for another two days. Naomi's first tummy check showed she hadn't digested her milk, but the doctor and nurse decided to continue since they were just starting the continuous feed. By Wednesday night though, she had started digesting well and would keep digesting well.

Thursday we arrived around lunch time to visit Naomi. We arrived after cares, so we peeked into her incubator to say, "Hi." We did a double take after peeling back her incubator cover. Naomi now had a head IV. It's not entirely pleasant to look at, but Naomi seems happy. As the nurse stated, "She won't have it on her first day of kindergarten."

Naomi was tucked in nicely as we waited for 4 PM. Ana would try nursing again before cares even though the lactation specialist thought Naomi was a little young to begin nursing. Naomi showed her a thing or two though and was very alert with "very mature behaviors". While not as successful as the first time, it was another happy moment for mom and daughter.

Naomi seems to have returned to her normal self. She stretches and twists her way out of her snugglie and lets the nurse know she doesn't like having her belly measured. She's back to smiling again and letting dad know she doesn't like to have her temperature taken.

And while she is getting poked with a lot of needles lately, she's alert and crying, which can be a good thing from time to time.

Back On the Milk Wagon

Sunday started out in a rush. Ana and I packed up after talking with the nurse. Our best efforts to get there early didn't pan out and we arrived at the usual 12 PM. However, since Naomi wasn't getting anymore milk, there were no cares.

We waited patiently for the doctor as we talked with the nurse. Naomi had passed a fair amount of barium in the morning, which was a good sign. After waiting around, the doctor finally arrived. Usually a late arrival is a good sign, but I didn't know what to make of it today. The doctor did his usual pancake style flip of Naomi and quickly stated that he was going to start her feedings again. We asked several questions about the left over milk in her belly, all of the air, and the X-rays.

The radiologist thought the X-rays looked normal and the doctor took us to his office to show them on the jumbo screen. It was difficult to discern much, but you could tell that the barium had worked its way through. Naomi was back on the milk wagon. She would start out with 4 mL and we'd wait to see how it went.

After the visit, I walked over to Ronnie's (the Ronald McDonald House) to get some dinner. I ate quickly hoping to return in time to help with Naomi's cares. When I entered the room though, I realized I was too late.

Naomi was practicing nursing! I couldn't believe it. I had spent most of the previous night awake pondering Naomi's digestion problems and now she was nursing. Usually the nurse will wait until 34 weeks to try because early birds don't suck, swallow, and breath in a coordinated fashion. Naomi, however, was once again starting early.

By the time 5 PM cares arrived, I was anxiously waiting for the syringe pull to check Naomi's stomach. When the nurse pulled back, I was deflated. She pulled at least 5 mL, that meant that Naomi wouldn't get more food. The nurse hooked up another syringe. She pulled back at least 12 mL more. Needless to say, I was shocked. Naomi didn't practice nursing, she actually succeeded at nursing. I was torn between being  elated and being worried. The nurse didn't seem too worried, so I chose to stick with elated. The nurse could tell by the consistency of the milk, that it was starting to digest.

We went home after cares and called in after the next feeding. Naomi digested all 17 mL that was returned to her stomach! After calling back in the morning, she had digested all of her milk over night as well. Now Ana is allowed to practice nursing twice a day and Naomi seems to be back on track. They'll continue to monitor her digestion, but so far things have been going well.

A whole lot of air

We've been on a roller coaster ride the past few days. While Naomi's circulatory system seems to be pumping away fine, Namoi's digestive system seems to be on hold. It all started with a lot of air in her small bowel.

As Ana mentioned earlier, Namoi had a barium enema followed by barium through her nasal gastric tube. After all of the commotion, Ana put in a super kangaroo care for her little girl. By Friday night, enough barium had traveled and the doctor didn't see any apparent problems in her small bowel. At that point, they decided to try to reintroduce feedings, so Naomi was started on 4 mL of milk.

When we arrived Saturday, we were relieved to hear that. Naomi was feeding again and that her small bowel looked normal. While we waited for the doctor to stop by, we visited with some friends who stopped by from out of town. So far Naomi seemed to be doing well, she still had some left over milk in her belly at the next feeding and she still had a fair amount of air in there as well. Early birds tend to swallow some air, and since they are usually on some sort of air supply, the problem is exacerbated.

The doctor wanted to continue feeding more milk to her, but he was worried about all of the air. Finally after some indecision, he decided to remove her nasal cannula. Mom and Dad were nervous, but Naomi was a breathing machine and seemed to do well. Our fears about spells were somewhat minimized after talking with the nurse and discovering they have ways to deliver oxygen to our little girl if necessary. So after I tried to work some kangaroo magic, we tucked her in for the night.

During the time I held her, her saturation was usually at 100-percent. We were pretty happy. Now if she could start digesting well, we'd be back on our way to the ICC.

Saturday night, Ana called in to check to see how Naomi was doing. I never did ask, but I suspect the call was more concerned with her saturation without the cannula, than her digestion. I was out picking up one-half of the grandparents from the train station. When I returned and saw Ana's face, I knew something was wrong.

After some quick tearful good-byes to my parents, Ana explained to me what the nurse had told her. Naomi had 12 mL of air in her belly at her next feeding and she had 2 mL of milk left. It wasn't enough to hold her milk at the next feeding, but it was similar to the first signs of problems the previous time around. Needless to say, it was another night of fitful sleep.

This morning we are packing up quick to head in to visit with the doctor. We suspect he will round earlier today than normal. The nurse told us this morning that Naomi's feedings are on hold. She didn't digest most of her milk at midnight and at 3 AM. She has missed a feeding once in a while, but I'm not sure she has missed two in a row. They took two X-rays last night, but we haven't heard any news concerning the results.

One good sign did arrive this morning. Naomi had a dad-brag-worthy stool in the morning that contained some of the barium from Friday. I now feel that I can change a baby bumble bee's diaper in a hive without getting stun after all this practice with wires, gizmos, and sanitary snugglies, so I'm fully encouraging her to bring in on.