The night was pretty good for Hana. She started fussing around 6:30, or earlier, this morning and I thought it was interesting that she goes to bed before the sun goes down and she wakes up before the sun comes up. This morning her diaper was so saturated that it had leaked all over the sheet. So, I changed the sheet. Unfortunately she started to vomit while Paul was in the shower. Her NG tube started to come out of her nose with each retch. I kept trying to push it back in and it would make her retch again. Finally, she had one big retch and the tube just flew right out. I’m sure that’s what happened yesterday too. One split second it was in place and then, in the blink of an eye, it was out.
We decided to wait again to put the NG tube back in. I wanted to try a bottle again, but I couldn’t wait too long because Hana needed her morning meds, eventually. Our friend and neighbor came over again around 9am and we got the tube back in. It is definitely a two person job. I tried giving her a bottle before putting the tube back in, but Hana wasn’t having it. I can’t remember quite how the day progressed after that. She went down for another nap and then vomited again around 10:30. Of course, I had already changed the sheets, so off the new sheets came. There was an hour where it was crazy – baby vomiting, vomit everywhere, carrots steaming on the stove, me running around trying to get us ready for an appointment. But friends showed up and everything turned out pretty much ok. Lots of stuff had to wait for hours to get done.
We went to see the feeding specialist again. This time I brought the Bumbo seat and tray, our new Adiri bottle and a carrot puree. The carrot eating went well, according to the feeding specialist. Hana is delayed in her solid food eating, but she seems to be progressing nicely. I was glad she said it was positive, because I kind of thought it wasn’t very successful, so it was good to get a different perspective. The bottle feeding was labor intensive. It involved blowing bubbles and popping them, singing songs, playing with puppets and other toys. I will continue trying with the bottle because I want the NG tube gone, but it requires a lot of patience and time. The feeding specialist pointed out some things I hadn’t noticed, or didn’t understand what they may mean – like Hana arching her back is probably her reflux bothering her. She also mentioned going to a physical therapist to help with some of her body positions while drinking and eating so that she can get in a more comfortable position. Her development doesn’t seem to be too delayed because of the hospital, but certainly some more strength in certain areas could help with eating.
I was exhausted after all that but we still had to get bloodwork done. That was awful this time. They had to poke her twice and she screamed and screamed. My poor baby. She went immediately to sleep when we got home. That’s what I should be doing right now, sleeping. Tomorrow we go back to Stanford for a check up. I hope it goes well. I hope they can help me rest easier and with more peace. But maybe the part about peace is up to me.
We had lots of great help today and a delicious dinner was delivered too. It is really beautiful how people are willing to help. These people inspire me!
4 thoughts on “Feeding Specialist 3”
The part about peace is up to God. I know you feel so overwhelmed you probably don’t feel like you have time to stop and pray. And you probably think you are using up all your alloted prayers for Hana. But you can pray for your own peace. You can pray for Hana to be well and eat and have comfort AND pray for yourself to have a restful night or just quiet your mind or heart. God answers every prayer even if it isn’t what we were expecting the answer to be. But even those tiny little prayers (my favorite one is “God, give me patience” on repeat!) help us build our relationship with Him. since our faith background was the same I don’t know if you felt the same, but I used to think I had to pray a list of things and if I left something of the list then I jinxed it from happening. Prayer was a robotic thing. But now that I have a different perspective, I feel like prayer should be more of a conversation with God and or Jesus. You can even tell them that you don’t like the way something is going! It is all about that deeper relationship, so my hope is that you will pay for yourself as well. It won’t take away from Hana… Only make you stronger. Love you all.
Philippians 4:6-7 NIV
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
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Conveyed very nicely Erin 🙏
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Kathleen, has a wedge or elevation of the head of the mattress been mentioned by the gastro Dr.? To help with the reflux, sometimes an inclined position is suggested when lying down or sleeping. Also, baby stores on line sell waterproof crib mattress sized pads. They are just like a very heavy flat sheet. (Smaller) can be used safely right on top of sheet. They are soft, not crunchy plastic. They can be easily pulled off and another laid flat without having to change a fitted sheet. Will try to send you a link. ❤️✌️🙏
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You are doing such a wonderful job with your dear, sweet girl. She is fortunate to have such a selfless and giving mother. Sending love and prayers.
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