Day 22 - We're Back In

We got to see him again today! Shelly was still feeling good after a full day of no symptoms so we returned today to spend time with Milo and hold him. He had his last tube taken out of his stomach and is now so much easier to move and hold. Also, after his blood transfusion they tested him without his CPAP again to see if the earlier difficulties were just caused by anemia.

We have our favorite nurse back after a week of not seeing her and she let us take what she called a "tube vacation" and took his feeding cord out while Shelly held him. No CPAP and no feeding tube meant a whole face clear of medical gadgets - we were thrilled. After Shelly held him, they put an NG feeding tube in (this is a smaller tube that goes in through the nose instead of the OG which goes in through the mouth) and set out to watch him to make sure he did alright without the CPAP for the rest of the night.

While Shelly was holding Milo, his physical therapist stopped by and walked me through a little infant massage course she teaches. We used baby dolls to practice the different kinds of touch that are beneficial to use with infants. We are supposed to wait until he is alert (eyes open and looking around) but not agitated (limbs calm with little movement) so it could be a while until I get to put my new skills into practice. Milo very rarely has his eyes open (we think the CPAP hat may have something to do with this as it squishes his face and makes it difficult for him to open them).

We went back to the hotel for dinner with the intention of returning in the evening so I could hold him for a bit but it was raining and I hate to drive in the rain and dark. We were both pretty tired so instead of holding him at 8 like we had planned we went to bed at 8:30pm. It was great to get such a chance to catch up on sleep. We are still both waking up every three hours to pump so if we don't go to bed early, we end up needing to sleep in to make up for the disturbed sleep.

Milo's Tube Vacation

Great Hair Shot on Mama

The first thing he did was bury his face in Shelly's chest

Doing so well!

Day 21 - Three weeks old (and officially 32 weeks adjusted!)

Eating milk and gaining weight!

We got a call at 5AM this morning from Milo's nurse practitioner. They needed our permission to do a blood transfusion. Premature babies often need blood transfusions because they are not yet up to speed on replacing red blood cells and they need to give a lot of blood for the different tests. They also put him back on the CPAP because he wasn't getting the oxygen he needed (this might just be a symptom of needing the blood transfusion). They are going to check again tonight to see if he still needs the CPAP after the blood transfusion and take it off if he seems better. There is very little risk to these blood transfusions and they use extra caution with the blood they keep on hand for preemies. If all goes well, this may be the only one he will need and in about a week they will start him on iron supplements to help with anemia.

He is down to one stomach drain and they are going to remove that tomorrow. He is still doing great with processing the milk and they continue to increase his amount (though they had to take a small break with the blood transfusion). They are going to continue to watch his belly closely but we are hopeful that everything is progressing normally.

Shelly is hoping to be able to visit him again tomorrow (if the sneezes and sniffles stay gone overnight) and we are looking forward to having a chance to hold him without all the tubes and attachments. They will be taking out the last stomach tube tomorrow and considering removing the CPAP tomorrow meaning when we see him again, he may only have the PICC Line and OG tube (food line) both soft and well attached making movement easy and comfortable.

Back on the CPAP temporarily and wearing a tiny blood pressure cuff

Day 20 - Feeling Better (and Missing Milo)

Today they told us that they are taking out a stomach tube! He is eating well and they are going to take one tube out a day. 

We miss him dearly. Staying away for a stuffy nose is really hard. I haven't gotten sick yet which is great, I've been taking vitamin c and echinacea consistently and resting a lot. Shelly is feeling mostly better but still stuffy and sneezing occasionally. 

We have found that our time here seems very pointless without being able to visit Milo. We wake up and basically just dawdle until bedtime with movies, games, and stepping out for groceries and food as needed. It would be a good way to relax if we didn't miss Milo so much.

We entertain ourselves by comparing pictures of Milo and Shelly and Llupus as babies. We thought that his dark hair, sideburns, and hairy back and shoulders came from Llupus and his button nose came from Shelly but when looking at baby photos, Llupus didn't have a lot of dark hair and he did have a similar nose and Shelly's family is known for having lots of dark hair when first born.

                     

                      Llupus at 1-Month

Shelly as a Baby

Milo at 18 days

Day 19 - More Good News

Shelly is feeling much better. Just a little congestion left. Hopefully, we will get to see him soon! They called us today to update us. Milo is eating 6 ml per feeding now and they are talking about taking his stomach tubes out tomorrow (some discussion about whether to take them out one at a time or all at once). He had another dose of Tylenol because of pain from the tubes today but it doing great without the CPAP.

Missing our baby boy

Day 18 - Eating!

I stopped in today to drop off some of Shelly's milk and was able to get this photo:

CPAP Off!

I also took a little video where you can see him moving. They started him on a tiny amount of food last night and increased it today. They will continue doing this slowly until he is fully supported by milk!

Day 17 - Milo's Doing Better Than Us

Shelly woke up this morning with a sore throat. This is pretty much the absolute worst because it means we cannot visit Milo until her symptoms clear up. All the babies in the NICU have very underdeveloped immune systems so it is critical to limit their exposure as much as possible. We are a little worried because we had a lot of contact with Milo yesterday and we really hope he did not catch anything from us. Best case scenario, Shelly feels better and we wait a full day of her having no symptoms before we return to visit Milo. In the meantime, we are resting in our hotel with all the vitamin C, echinacea, ginger tea and naps that we can handle (me too, fingers crossed I don't catch it).

We called to check in on Miles and the GI study is still progressing but slowly. All looks good so far and the study should conclude tonight. Potentially, he can get started again on milk tonight or tomorrow. They want to observe him for three days with milk before they take the drains out. We cannot wait for that to happen because the drains are the only thing that would be causing him discomfort at this point beside the CPAP in his nose which doesn't seem to be that bad.

By popular demand, here are some photos of our hotel room and the hospital.

Our living room

Our kitchenette with a full-size fridge (which is good because we need the storage for all the milk Shelly is making)

Our bedroom

Our bathroom

Our NICU (Milo is the nearest isolette on the left)

The Starbucks on the way up to the NICU

Us waiting in line for our morning coffee

Day 16 - Upper GI Study

3 lbs 2.3 oz - making good progress

Great reassuring stats on Milo this morning

Today Milo was great. The nurses say he hasn't had pain medication since yesterday morning and hasn't been showing pain signals anymore. Shelly held him again skin to skin (without the CPAP) and he took the transfer to her like a pro. Normally, he'll cry during the lift and pass off but today he didn't even whine and snuggled right in. After about an hour and a half he got fussy though and started to try to climb up Shelly. It looked a lot like he was lifting himself off his tummy so we put him back in his bed because it seemed like his stomach drains were hurting him. He calmed down when he returned to his bed and headed off for his upper GI study. They had to keep monitoring him after they introduced the contrast to see it progress all the way through his system so they weren't able to give us a definitive result today but everything they had seen so far looked good.

Milo pointing out that he got his Mama's nose

CPAP break on Mama

Happy and sleepy from all the oxytocin

While Milo was doing his GI study, we headed to the salon so Shelly could get her hair cut. She was going to get a balayage (natural looking highlights) but the hair dresser was really good and was able to tell us that it wouldn't work very well with her hair thickness, so we just went for the cut.

Round brushing after the cut

Perfect haircut!

Llupus and Matt drove into Portland for a rock climbing tournament bringing us games, food and company. We had a great evening of games and dinner with them.

New games to keep us entertained