The challenges of the past week appear to have calmed and both babies had a very good day. Trent was taken off the ventilator this morning and is doing well on the CPAP only requiring 24% oxygen.
This morning he weighed 1200 grams ( about 2lbs 10oz) and has grown out of the micro premie diapers ( about the size of a post it) and has now moved up to the next size. He also has moved up to a larger passifer. He is doing well on his feeds and is up to 11ccs every 3 hours. The attached pictures were taken as he was being removed off the ventilator. We are hopeful that he continues to be stable through the night so we are able to hold him tomorrow.
Sophie also had a good day – and was breathing at room air ( 21% oxygen) She too continues to do well on her feeds and is now up to 8ccs every 3 hours. Her weight also continues to increase and she is now 950 grams. 1 kilo is right around the corner….. Tonight I was able to hold her doing the kangaroo skin to skin hold. Its magical to be able to hold them. [[Image:the_kids/20050430-Trent 31wks.JPG]][[Image:the_kids/20050430-Trent 31Wkss.JPG]][[Image:the_kids/20050430-Holding Sophie 31W.JPG]]
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The babies are having a better day today. Sophie continues to be stable on the CPAP machine and is at 21% oxygen. She does not seem to be bothered by the prongs in her nose and is enjoying being able to suck on her passifer again and cry when she wants to( the higher level breathing support from the ventilator that she was previously on requires a tube be stuck down her throat so the passifer was a challenge prevented her from using her vocal cords). She continues on her antibiotics for her infection but seems to be responding to those as well. Her feedings will continue to increase every 12 hours and she is now up to 5ccs of breast milk every 3 hours.
Trent continues on the ventilator and seems to be having a better day today as well. He is also on antibiotics for a urinary tract infection and appears to be responding to those. Assuming he gets an all clear CBC this weekend, the doctors will try to remove him from the ventilator and place him back on the CPAP. He too continues on his feedings and is up to 8ccs every 3 hours and is tolerating them well. Both babies continue to gain weight- Trent is now 1140 grams ( 2lbs 8oz) and Sophie is 940 grams ( a little over 2lbs). The doctors have told us the 32 week mark in conjuntion with a weight over 1 kilo typically puts premies into a much more stable place. Next week they will be 32 weeks so we’ve just got to get Sophie to the 1 kilo mark and we’ll be on our way.
Today they also had their first eye exam. One of the issues with micro premies is issues with the development and immaturity of the blood vessels related to the eyes and retna detachment. In most cases, if there are issues with the vision- it can be corrected with laser surgery. Stanford starts eye exams earlier than most hospitals to be able to address issues early but we won’t know if the babies have vision issues and how sevear they are until their original due date ( 6/29)
For now- we’ll just take it one step at a time.
Yesterday was a very hard day for the babies and for us. Trent continued to experience repeated apneas and was put back on the ventilator. A chest x-ray was done and well as a CBC looking for infection but other than a slightly elevated white count ( for which he was put on antibiotics for in the event he had another urinary tract infection), there was no definitive reason for his continued breathing issues. The doctors feel that either he was just tired out from having to work hard with the CPAP or a new infection was causing distress. By yesterday evening he did appear to be more comfortable though and was experiencing only a few desats. Today he continues to do well on the ventilator requiring minimal oxygen and his feedings have been increased to 8ccs every 3 hours. His weight also continues to increase and he is heading towards the 3lb mark. The step back to the ventilator is disappointing but we’re hopeful with some rest, he may be able to try again on the CPAP this weekend.
Sophie also experienced breathing distress yesterday with lots of desats and finally ended up pulling out her ventilator tube while I was visiting her. Watching my little baby bird be bagged and given manual breaths with lots of people rushing to help her was gut wrenching for me. In the end, the doctors decided that since she keeps pulling out the tube, that she was probably trying to let them know she wanted off the ventilator and decided to put her back on the CPAP. During the process of fitting her with the machine, I was asked to hold her arms ( she kept trying to pull the breathing plug out of her nose) and sing to her to try and calm her down. It was very scary but we were able to get her calmed and get her hooked on the machine.
She too is doing better today requiring very little oxygen and is continuing to do well on her feedings. Her head CT from this week shows that her hydrocephilis is shrinking and the daily fluid taps are working. Her head size has also remained stable which shows that there is no pressure on her brain. She’s now 940 grams and we look forward to her hitting the 1 kilo mark soon.
The babies continue to struggle this week. Trent did respond well to the breathing medication yesterday and has settled somewhat but is struggling with fluid retention ( he gain 73 grams over night). He is still receiving Lasik’ to combat this but the side effects of this drug can have very serious impacts to premies ( throwing off their electrolytes, kidney issues and calcium issues) so its not a drug that babies should be on long term. So, I’m not sure how the doctors will address this issue going forward. He continues on his feeding – now up to 8ccs and we’re hopeful that if his breathing continues to be stable today, the increases can continue in the amount of milk he is getting.
Sophie too calmed down yesterday afternoon but went on to have a difficult night. She had multiple desats and brady’s ( when her heart rate drops low and requires a nurse to make her breath) She went on to pull out her ventilator tube and had to be reinhabated with a new tube. The new tube seems to have stabilized her breathing and the nurses were wondering if the tube had been pulling up yesterday impacting her breathing. There was also concern that she was running a fever so tests are being run to see if the infection she had last week is not responding anymore to antibiotics. The good news though is that she has finally crossed the 2lb marker and is weighing in now at 910grams. Her nurses also commented that she is finally getting a little butt.
She does continue on her feeds and like her brother- we are hopeful these can be increased today if she remains stable.
Please pray for stability for both babies…
The babies are having a tough day today. While Trent continues on the CPAP, he’s had many, many episodes of apnea throughout the day and had to manually bagged to get him going. Should this continue, he will need to go back on the ventilator. The doctors have done tests looking to see if he’s got an infection ( via blood work up), adominal ultrasound and chest x-ray looking for the reason but so far everything has come back as fairly normal. He’s now receiving a blood transfusion to address a low hematocrit and several other drugs to help his lungs. His feeding were cut back to 4ccs last night over concerns that he might be septic in his belly but since the tests have come back inconclusive, the feedings will continue to be increased over the next 12 hours.
Sophie continues to struggle as well with her breathing and her oxygen requirements are way up today. She appears to be getting over her infection and her feedings have been restarted but much like her brother, the doctors are unable to find the clinical reason for her struggle. She too will be given medications to help her lungs expand.
As we were told when the babies were born, our journey in the NICU would be a roller coaster and today is a reminder for me of how hard it can get.
Today we switched the entire medical team for the kids ( one of the not great things about being at Stanford) so we are especially grateful that both children have primary nurses who are able to bring medical team up to speed. Unfortunately when there is a switch to a new team ( which can happen every two weeks), the new doctors can sometimes rush to go backwards in treatment when issues arise. In these cases, the babies primary nurses have been the voice of reason as their very familiar with the behavior of the babies and see them on a daily basis.
Trent continues to manage on CPAP (with today being one of those cases where the nurse asked the doctors not to put him back on the ventilator immediately when his breathing became distressed) but needs to be sunctioned on a regular basis to prevent mucus build up which makes his breathing difficult. His feedings have also been increased to 8ccs every 3 hours. The goal is to get him up to 15ccs and for him to gain 20grams per day. Right now he is at 1034 grams and is gaining 10-15 grams per day.
Miss Sophie continues on the ventilator but her nurse has asked the doctors to begin weaning her down on her settings so that she can go back on the CPAP if possible. Her feedings have also been restarted and she seems to be tolerating it well. She continues to have blood cultures everyday but the infection appears to be going away. The big concern for her now is her nutrition. Apparently her liver function is not where it should be and this is due to medications and the nutrition supplement she is getting. The plan to correct this is to increase her feedings on a regular basis as long as she can tolerate them. The medication she was given to correct her fluid retention has done the trick and she is back down to a normal weight – 850 grams. We are hopeful that she can just continue to grow and get off some of the medications that are affecting her liver function and calcium absorbtion.
The babies have had a fairly calm day. Sophie continues on her antibiotics but today’s blood culture did not show the infection so it looks like they may be working. Unfortunately the blood transfusion she received on Friday and infection have got her retaining fluid. She is now on Lasiks to help her get rid of the extra fluid ( which has made her gain 100grams over night). She does seem more alert though and we were able to hold hands today ( she was holding my finger) for a long period of time today. She also was able to restart feeding ( 1cc) today and we are hopeful that is she digests that- they will be increased.
Mr. Trent is continuing on the CPAP and the breathing distress he has been experiencing over the last two days seems to be related to a very large mucus plug that was removed from the back of his throat today. I was extremely blessed to be able to hold Trent today.
We did something called a kangaroo hold ( skin to skin) that is suppose to promote development. It was so wonderful to have his heart next to mine. He was so sweet and calm and just looked at me as I sang to him. The nurses told me that while it seems like a very involved process to get the babies out of their isolettes, after the parent holds- the baby is completely calm for thei night.
We are hopeful that Aaron will get his chance to hold his son tomorrow.
We pray for a quiet week as the babies enter their 6th week of life.
[[Image:the_kids/20050424-Trent- 30weeks.JPG]][[Image:the_kids/20050424-Holding T-30wks.JPG]]